Smith Family Kidney Adventure

Settling In

2010-11-29T22:53:00.005-05:00

We arrived at the airport in Burlington on Tuesday night to a crowd of 20 smiling faces with signs, balloons, flowers, and hugs! It was a wonderful greeting from family, homeschooling friends, and church family! Thank you to those of you who came out on a late night and to those of you who wanted to come, but couldn't make it. What a sweet surprise!

Samuel had to be up at the hospital on Wednesday morning for labs and to check in with the doctor. The morning stretched out as we visited and shared our exciting news with friends at the hospital.

Despite his original intentions, Samuel wasn't up for a road trip on Thursday morning so half of us stayed home and the other half traveled to southern Vermont for Thanksgiving. I was very sorry to miss the time with extended family, but Lydia and I managed to throw together a respectable Thanksgiving dinner and we enjoyed a fun evening of card games and Wii. By the way, among the traveling group was Hannah. She is doing great and healing up well!

It was great to be back fellowshipping with our dear church family on Sunday. So many have been praying. What a testament of God's faithfulness to see Samuel walking into church! I'm only sorry Samuel's smiling face was hidden behind the mask he has to wear for a season while out in public. He only lasted through the first half of the service, but it was wonderful to have him there at all.

This morning I wept for joy and then cheered, screamed, and chased Samuel around the kitchen for a hug when I realized it was Monday and we didn't have to go to the hospital for dialysis! Oh, what a relief! What a joy!

Please continue to pray for us as we settle into a new normal. There is processing, adjusting, restoring, reordering, and cleaning that needs to be done after living in varying degrees of survival mode for 3 1/2 years. Lots of work ahead, but by God's grace we will take it slow and make it through!

We're heading home!

2010-11-23T07:54:00.002-05:00

Samuel and Hannah have had a few days to recuperate and get used to their new bodies plus and minus kidneys. They weren't up to doing much, but we made a point to get them out of the hotel room at least once a day for a walk. We found a nearby cinema with 24 movie theaters and learned that tickets are not expensive if you go before noon. That was just their speed so we went a couple times. Shuffle in, sit for a couple hours, shuffle out.

Samuel has also developed a hankering for Whataburgers and mango smoothies from Panera. Smoothie and burger runs have been an almost daily activity. Add to the schedule lots of naps, the history channel, and some dinners out and you've got a pretty good idea how they've spent the last few days.

Yesterday in clinic Samuel and Hannah both got official clearance to head home! Labs are good, incisions are healing. To celebrate, we decided to drive into downtown San Antonio. Along the way, Samuel needed a snack so, of course, we had to stop at Whataburger. Up until now, we had only been using the drive-through, so yesterday's visit inside an actual Whataburger restaurant was a big event. We all sat and took great pleasure in watching Samuel enjoy food!

Here is Samuel schmoozing with the Whataburger manager. We'll have to make one more trip to Whataburger today before we leave town because the manager gave Samuel a voucher for a free burger and you sure won't find a Whataburger in the Northeast!

We eventually made it downtown and did some shopping at the Market Square and had a late lunch at a Mexican restaurant, Mi Tierra. We had the full experience complete with Mariachis singing at our table!

We also went to the bakery at Mi Tierra and got a box of traditional Mexican goodies for the dialysis nurses back home. It's not chocolate, but hopefully they'll still enjoy the treats! I can't believe I actually got the box into my suitcase!

Well, I still have some things to do before we head out. Can't wait to see the other kiddos! We are scheduled to land in Burlington at 10:30 tonight.

If you don't hear from me for a few days, you should assume that all is well. We are coming home and jumping into a busy schedule. Samuel has an appointment up at the hospital with Dr. Guillot bright and early Wednesday morning and, of course, that will include a visit with his beloved dialysis nurses! Then those in our family who are able and available will be driving down to Brattleboro on Thursday to celebrate Thanksgiving with family. It truly will be a celebration! We have so much to be thankful for!

Happy Birthday, Lydia!

2010-11-19T19:02:00.002-05:00

Today my baby turned 13! What a lovely young woman she is becoming! I know Lydia is being well-cared for and loved on by family and friends (thanks, everyone!), but it is hard not to be there to celebrate with her.

While not a member of our family's kidney club, Lydia has suffered in other ways through our kidney adventure. She was 9 years old when this craziness started. I am trusting that the Lord will use these difficulties in her life just as He is doing in mine and Tom's and Katie's and Samuel's and Esther's and....

Happy Birthday, dear Lydia! You are loved!

Hallelujah, He's Out!

2010-11-17T16:05:00.000-05:00

Samuel was discharged from the hospital this afternoon, only five days after receiving a new kidney! To see him walking around, laughing, eating, and teasing his sister, you would never guess that he just had surgery. It is unbelievable! Hannah is a little envious of Samuel's newfound energy.

Samuel and Amanda, the exchange coordinator, say goodbye as Samuel checks out of the hospital.

Today just happens to be my birthday and I couldn't have asked for a better gift! The more we learn about Samuel's sensitivity level, his chances of finding a match, this exchange, and how it came about that Samuel was included, the more we are in awe of what the Lord has done! What a miracle! What a gift! We are so thankful!

One out, one to go!

2010-11-14T20:25:00.002-05:00

After beginning the day feeling like she was going to die, twelve hours later Hannah checked out of the hospital!! She is now settled comfortably in the hotel and is looking forward to a night of uninterrupted sleep.

Much to Samuel's dismay, we had to leave him and Tom behind in the hospital. The "problem" is that he is feeling too well and doesn't think he needs to be in the hospital. The lab results confirm his progress. His creatinine this morning was........wait for it........1.1! That puts him in the normal range for people with two kidneys!

Samuel has had enough of the foley catheter. It is really bothering him and he wants it out - now! He is scheming of ways to bust out of the hospital. His nurse assured him today that the doctors will not let him leave before day #5.

We'll be doing our best to keep Samuel distracted for the next couple days. Grandpa Ed is doing his part by teaching Samuel how to play poker!

His Mercies Are New Every Morning

2010-11-13T15:03:00.011-05:00

It has been a great day so far! After a few rocky hours last night, Samuel's fever went away sometime in the wee hours of the morning. When I came down to see him at 7:30, he was sitting up in a chair looking fantastic. By 8:30 he was moved up to the transplant floor. At 9:30 he had a bowl of rice krispies. By 11:30 he had walked the loop around the floor two times on his own initiative. At 12:30 he ate a hamburger! By 2:00 he had done three more laps. All this in less than 24 hours after getting out of surgery! Unbelievable!! But wait, there's more....his creatinine was 2.4 this morning!

Hannah is feeling like she got hit by a train and is having some pain from the leftover carbon dioxide that was used to inflate her abdomen. Her foley catheter was removed and her IV was disconnected, though not removed from her hand. Those changes are making it easier for her to get around. She still has a tiny catheter inserted into her incision that is delivering some steady pain relief to the surgical site.

Samuel was determined to visit Hannah before she visited him, so as he was being transferred from the ICU to the transplant floor, he took a little detour to the 5th floor to surprise Hannah. Amanda Weichold, our wonderful exchange coordinator here in Texas, happened to be there with Hannah and we all had a nice visit.

Hannah later returned the visit and claimed the title of the first to walk to visit the other. That's Tom's cousin, Nancy Copeland Kelley on the left. Another cousin, Katherine Copeland Blume is pushing the back-up wheelchair and following behind. Both ladies arrived yesterday afternoon to join in the fun.

Here are my two amazing children. You would never guess from looking at them that they had both just had surgery.

News of the historic paired exchange is spreading. A local TV reporter, Wendy Rigby at KENS5, interviewed Samuel while he was in pre-op yesterday. Her story was carried by our Burlington station, WCAX. This morning at breakfast in the hotel, family members were surprised to see a clip on CNN.

Samuel's only compliant about the video was that he thought he had said a lot of great things about the exchange, but they only included him saying, "I think it's really cool." He was also disappointed that they didn't include his shout out to his dialysis buddy, Josh. :)

If you haven't seen the video, here is a link you can copy and paste.

http://www.wcax.com/global/story.asp?s=13493686

This exposure is great! The more people who know about the option of paired exchange, the better! Let's get a kidney for Josh and Molly and Chelsea and Stephanie and Mary and Katie G. These are just a few of the 87,000+ people who are waiting.

If you would like more information about becoming a living donor for someone who needs a kidney, please find the nearest transplant center and give them a call.

If you are in Vermont or northern New York state, you can call the toll-free donor hotline at Fletcher Allen Health Care. The number is 877-467-5102.

It could make a world of difference for someone who is waiting.

Small hurdle

2010-11-12T22:04:00.005-05:00

Samuel has a fever that is making him restless and more uncomfortable. It is likely a reaction to an immunosuppressant drug that was given during the transplant. They are doing blood and urine cultures just to eliminate other possible sources. He is still getting great output from the new kidney. Hopefully, some time and some Tylenol will help with the fever.

Some rest probably wouldn't hurt either. We are all in need of a good night's sleep.

Tears of Joy

2010-11-12T16:23:00.002-05:00

We've got urine, lots of lovely urine!! Samuel has a working kidney! Creatinine is already dropping... 6.2 yesterday, 4.5 after only one hour in its new home.

Samuel is a bit uncomfortable (to be expected) and not really awake yet. He moans every now and then. Everything is proceeding normally, without complication.

Hannah is drifting in and out of sleep, waking up to join in a conversation for a moment and then falling back asleep.

What a weight has been lifted. I feel like I can breath again! The tears are flowing freely.

"For this reason I bow my knees before the Father,

from whom every family in heaven and on earth derives its name,

that He would grant you, according to the riches of His glory, to be strengthened with power through His Spirit in the inner man,

so that Christ may dwell in your hearts through faith; and that you, being rooted and grounded in love,

may be able to comprehend with all the saints what is the breadth and length and height and depth,

and to know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God.

Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us,

to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen."

~ Ephesians 3:14-21

Hannah's out!

2010-11-12T14:32:00.005-05:00

Hannah is done and on her way to recovery! She did great! We're hoping to see her soon. A kind nurse took some pictures for us. Isn't instant technology fun!

Hannah's in there somewhere!

Hannah said she was fine about having a film crew in the OR as long as she didn't have to say anything!

It's a beauty! What an incredible gift!

Samuel's nurse just called from the OR to say everything is going well; vitals are stable. Thank you, Jesus! They are beginning to put the kidney in. They should be done in about an hour. We likely won't see Samuel until an hour after that.

In the OR

2010-11-12T11:44:00.000-05:00

Please be praying for my wonderful, loving, courageous children today. They are both now in the operating room.

Hanging out in Pre-op

2010-11-12T08:00:00.000-05:00

T minus 18

2010-11-11T17:05:00.007-05:00

The countdown is well underway! This is day one of the exchange and the team here is currently operating on pair number 5. Hannah and Samuel are scheduled for their surgeries tomorrow morning at 11:00. They will be pair number 8 and 9 out of 16.

The San Antonio Express had a brief article about the kidney exchange. You can copy and paste this link (sorry, the link feature doesn't seem to be working):

http://www.mysanantonio.com/health/giving_giving_giving_gifts_of_life_107143753.html?showFullArticle=y

I was told that ABC News will run a story about the chain on their evening news tomorrow night.

And if you missed Katie Couric's story on the National Kidney Registry last night, you can link to it here:

http://www.cbsnews.com/video/watch/?id=7042488n&tag=related;photovideo

This morning we spent some time at the Alamo. It is a lovely oasis in the center of the city that has grown up around it. On this Veterans Day, it was a sobering reminder of the connection between freedom and sacrifice.

Samuel is currently having his 510th dialysis treatment. Lord willing, it will be his last.

Texas Update

2010-11-10T11:03:00.011-05:00

We arrived in San Antonio late Friday night. It was a difficult trip for Samuel who had an "8" headache despite being loaded up with pain medication in dialysis. As instructed by the transplant team, Samuel wore a mask to minimize his chances of catching something on the plane. The mask, the wheelchair, his closed eyes and body posture drew some concern from airport and flight personnel. Everyone was very kind. On our flight from Detroit to San Antonio, Samuel was offered a seat in first class at no extra charge. It was great that he had a more comfortable place to rest, but I'm sorry to say he wasn't feeling well enough to eat the fancy meal that was served nor to appreciate the whole experience. Had there been a second first class seat available, we would have put Hannah there as well. She certainly deserves some royal treatment!

You can be sure I took every opportunity to let people know that Samuel was on his way to get a transplant through a paired exchange and that Hannah was donating on his behalf. Too many people are unaware that this option exists. I am doing my part to change that! Too many other people are still in need of a kidney.

Speaking of getting the word out...I believe that CBS Evening News with Katie Couric will be airing a story on paired exchanges tonight. Check your local listings. They will be highlighting the work of the National Kidney Registry. Samuel was listed with the NKR along with potential donors Linda Paroline and Hannah. While Samuel ultimately will not be participating in a paired exchange with the NKR, it is through the personal involvement of the NKR's founder and president, Garet Hil, that a match for Samuel was discovered at the Texas Transplant Institute. I have had suspicions of Mr. Hil's involvement, but yesterday it was confirmed by one of the transplant surgeons. We are eternally grateful to Garet Hil for his heroic efforts to find a kidney for Samuel. We are praising God for the provision of a kidney for Samuel through Mr. Hil's connections!

Back to Texas...we spent a good chunk of time on Saturday finding and then changing hotels after spending one night with bugs and too much dirt (I'll spare you the details!). We were sorry to leave. The folks there were very nice; it just wasn't a good place for us to be. Samuel was bothered by the disruption, but was finally convinced that we had made the right decision when he discovered that, unlikely the first hotel, this one has the History Channel! :)

Later on Saturday, we headed over to Sea World and spent the first of two lovely, 70+ degree afternoons strolling around the park. We enjoyed some shows and were mesmerized by the amazing sea animals. Hannah was coerced into riding not just one, but two roller coasters. It was her first roller coaster experience and while she seems to have survived it, I'm not sure I can say she enjoyed it! She's a good sport!

For dinner we had the full Texas Bar-B-Q experience at Rudy's. It was great!

Sunday morning we finally unpacked and got settled into our new hotel. It is very lovely with a nice 2-bedroom set up. Oh, and it is even clean! In the afternoon, we went back to Sea World for a few more hours to see some things we had missed the day before. The weather was just incredible!

Monday morning we reported to the Texas Transplant Institute for labs and a couple appointments. They decided to hold off on Samuel's dialysis in hopes that he might be able to have only one more dialysis treatment between now and the transplant. As of today, it doesn't look like it will work out that way.

On Tuesday morning, we were back in clinic for more labs and a series of pre-op appointments for both Samuel and Hannah. We met more of the team and got some more details about the exchange. Samuel was not feeling well and the decision was made to dialyze him. Dr. Kapturczak, the nephrologist, had kindly arranged for Samuel to have dialysis as an inpatient in the hospital rather than in an outpatient clinic with their limitations and restrictions. Dialysis went amazingly well! Samuel only had a minor headache by the end. What a blessing! It was a long 9 1/2 hours at the hospital, but it was a good day.

The exchange has been finalized with 16 pairs of donors and recipients. It is all being started by an altruistic donor. The last person in this chain to receive a kidney has a donor who will act as a "bridge donor" to start another chain later in December. That chain is looking like it will include 8-10 pairs. This concept of paired exchange has such potential to get people transplanted and off dialysis. It is very exciting! As I've mentioned before, this will be the largest paired exchange ever to take place under one roof. The whole hospital has been gearing up and preparing for "the big exchange." Thirty-two surgeries will be performed over three days beginning tomorrow. Participants will go into the OR in groups of four. There will be two surgeons removing kidneys (Dr. Shen and Dr. Vick) and two surgeons putting kidneys in (Dr. Wright and Dr. Bingaman). A fifth surgeon (Dr. Palma-Vargas) will be a floater, assisting wherever needed. Hannah and Samuel are scheduled to be the second group on the second day, which translates into Friday around 11 a.m. Texas time.

Samuel will likely have dialysis again on Thursday (tomorrow). They will admit him into the hospital again to do it as an inpatient. After dialysis, he will be moved down to the transplant floor where he will stay overnight so they can be sure he is feeling well and ready for the transplant on Friday morning.

Hannah will need to arrive at the hospital on Friday morning at 5 a.m. Her surgery is expected to take two hours and Samuel's will last about three hours. Samuel will go to the ICU for 24 hours following surgery, then to the transplant floor where he'll be for 5-7 days. Hannah will go briefly to recovery when she comes out of surgery and will then be transferred up to a general surgical floor where she'll stay for 2 or 3 days.

Normally, exchange participants aren't given the opportunity to meet each other until six or more weeks after the transplants. Since this is such an historic exchange and is likely to get some national media coverage, it is possible that the hospital will allow us to meet each other before everyone gets discharged and dispersed to the four winds. We'll see! We will at least bring a note for Hannah's recipient and Samuel's donor and ask the team to pass it along to them. The excitement is mounting!

Our local support team begins arriving today. Tom's mom, Mary Ellen Copeland, and her husband, Ed, are flying in this afternoon. They will be in town with us for the next week. They have been such a help to us with so many of the trip details. Two of Tom's cousins, Nancy Copeland Kelley and Katherine Copeland Blume (Esther's donor), will arrive on Friday and stay for the weekend. It will be great to have some extra hands and feet and people to hug!

I also want to mention our support team back home. Katie and Grace are tending the home fires (literally) and caring for the animals at home. Wendy Ordway is caring for our larger animals who winter in her barn (thanks again, Wendy!). Sweet friends from church have been supplying the girls with some meals. Joanne Conchieri is covering my Latin class for me and keeping my students busy (miss you guys!). My sister, Laura Systo, is looking after Esther and Lydia for the next couple weeks. It will be a great opportunity for them to connect with other family members and build relationships with family that we don't see often enough.

And then there are those of you, both near and far, who are thinking of us, wishing us well and, most importantly, praying for us! I can't tell you how grateful I am! It is a great comfort. May the Lord be glorified by your prayers and our lives.

Friday's Send-Off

2010-11-07T23:30:00.002-05:00

I am a little behind on updating the blog. Our schedule has been so full there hasn’t been much computer time. I’ll try to get you caught up.

The conference in North Carolina was excellent! I got home at midnight on Thursday with a notebook and flash drive full of information to review and process. I had 16 hours between getting off one plane and getting back on another. Those hours in between were busy!

Samuel started dialysis at 6:45 a.m. on Friday and Esther had labs and a check-up (she's doing great!). Later in the morning, the dialysis team surprised us with a wonderful send-off including cake, cowboy hats, and lariats. Some of these folks came in on their day off to say good-bye to Samuel.

Our hearts are full of gratitude and appreciation for all that this terrific team of nurses and support staff has done for us. They are skilled professionals, compassionate caregivers, and generous friends! They have cared for Samuel and they have cared about Samuel. They have encouraged and cheered him through some dark times. They have been his nurses and his friends. They have our highest respect and our deepest gratitude.

Thank you to Ann Marie, Bette, Bill, Fran, Helen, Jackie, Kim, Marley, Michael, Nancy, Pat, Renate, and Susie. Special thanks to Betty and Jane – there at the beginning, the end, and the worst of it in between! And every great team needs a great leader. That would be Dr. Guillot! We love you all!

Here are a few of the folks at our rootin’, tootin' Texas send-off...

Ann Marie sewed a pair of comfy fleece pants for both Samuel and Hannah. Nicholas came to help celebrate.

Nancy H. gave Samuel a heart-shaped rock that had been special to her. He has been carrying it around in his pocket ever since. Samuel and Nancy would share a special greeting each time they saw each other. Nancy always made us smile.

Samuel always enjoyed working with Bill, one of the boys.

Samuel says good-bye to his dialysis buddy, Josh.

This is one of the sad things about getting a transplant - Samuel will miss spending time with Josh. How we have enjoyed him and his mom, Kelly! This month marks Josh's one year anniversary of beginning dialysis. That is long enough! I am committed to promoting education and awareness about organ donation, both living and deceased, so that other young people like Josh and Molly and Chelsea can also get a transplant.

Anyone have an extra kidney to spare?

Countdown to Transplant!

2010-10-31T23:35:00.003-04:00

Sorry to leave you all hanging!! We arrived home from San Antonio on Tuesday night and it has been a whirlwind ever since. I am feeling like a cross between a travel agent and an event planner. There have been so many details to arrange since we got home.

Everything went well in Texas. The team there seems great. They are excited to be able to include Samuel in the chain and are happy with Hannah as a donor. Plans are moving forward. We are scheduled to fly back to Texas on Friday afternoon, November 5th. That is less than 5 days from now!! We'll have the weekend to do some sightseeing and then we'll be busy with dialysis and appointments until the big surgery day on Friday, November 12th.

The chain is still a work in progress and is likely to consist of 12 to 17 pairs. This particular chain is being started by an altruistic donor (can't wait to meet that person!!) and therefore can be linear rather than a closed circuit. The team is still working on the tail end of the chain, hoping to include as many people as possible. It will be the largest paired exchange ever to take place at a single institution. As of last week, Samuel will be the youngest "link" in the chain. We are so grateful that this appears to be the Lord's provision for Samuel to get a kidney. It is an honor to have been invited to participate in this historic event.

And if that weren't exciting enough and if I didn't already have enough to keep me busy......I flew to North Carolina today to attend an intensive training seminar entitled "Hospitals and Communities Moving Forward with Patient- and Family-Centered Care." I am here as part of my work with the newly-formed Patient and Family Advocacy Council for Baird 5 (the pediatric unit of Fletcher Allen). The seminar program is incredible - it reminds me of the analogy of trying to drink water from a fire hose. It is a privilege to be here!

I will return home late on Thursday night, Samuel has dialysis from 7:00 a.m. - 1:00 p.m. on Friday, and our flight to Texas leaves at 4:10 p.m.! I volunteered to attend the conference back in September, long before any hint of a transplant in Texas. Tom summed it up well when he said, "At the time, it seemed like a good idea." We're just taking it all as it comes!

Well, I need to get to bed so I can be well-rested for 4 full days of workshops. Please continue to pray for the details of the paired exchange. It is still very fragile. Everyone involved needs to stay healthy enough to safely undergo an operation. The surgeries are scheduled to take place over 3 days - November 11th through the 13th.

On this date exactly 3 years ago, Samuel had his tragic first transplant. That's behind us now and we're looking forward to a successful second attempt!

Let the countdown begin!

We're off to Texas!

2010-10-22T23:50:00.005-04:00

This I recall to my mind,
therefore I have hope.
The Lord's lovingkindnesses never cease,
For His compassions never fail.
They are new every morning;
Great is Your faithfulness.

Lamentations 3:21-23

Both Tom and my dear friend, Anje, recently reminded me of this scripture. The Lord indeed continues to show His faithfulness to our family!

We have been unable to find a compatible living donor for Samuel despite the many wonderful, generous people who have stepped forward to offer over the last 3 years. (May God bless each and every one of you!) Additionally, Samuel’s name has never even once come up on the deceased donor list. He just has too many antibodies against very common antigens. That has made him incompatible with 99% of the population.

Back in March of this year, in hopes of finding a compatible donor, Samuel was listed with the National Kidney Registry. This fairly new organization connects pairs of donors and recipients in a type of chain called a paired exchange. The wonderful woman who was willing to donate on Samuel’s behalf was Linda Paroline. Samuel and Linda were the first donor/recipient pair from Fletcher Allen to be registered with the NKR.

The transplant team continued to encourage us to find additional donors to list with Samuel as each donor, with their unique genetic profile, could lead to a different possible chain.

In June, Samuel’s 21-year old sister, Hannah, passed all her screening and was listed as a second possible donor for Samuel with the NKR. I also want to make special mention of Grace, Samuel’s 19-year old sister, who was one of the first to offer to donate a kidney on Samuel’s behalf. Unfortunately, Grace was disqualified as a donor. Thank you, Grace! We love you!

On Friday last week, after 3 long years of waiting, we got a phone call from our transplant coordinator saying there might be a paired exchange that could include Samuel and Hannah as his designated donor. We were told that the target date for the transplant was around the second week of November and that this chain could include as many as 16 pairs of donors and recipients. That would be 32 surgeries to orchestrate! It was still very early in the planning and there were many details to work out.

On Monday, Samuel and Hannah both had blood drawn and sent away for cross matching with their respective donor and recipient. We were told that Hannah was being asked to travel to Texas to donate to her recipient in San Antonio. Hannah was willing, and we made the difficult decision that I would travel with Hannah and Tom would stay here with Samuel for his transplant. We were asked not to share any details as plans were still too tentative.

On Wednesday, we got word that the cross-matches for both Samuel and Hannah were negative. In this case, negative is a very good thing! We were also told that the timing and logistics of the surgeries would make it impossible for a kidney to be shipped to Samuel in Vermont. If we wanted to participate in the paired exchange, both Hannah and Samuel would have to travel to Texas. This was a bit of a shock! But we are always up for a new challenge, especially if it means that Samuel can get a transplant, so we began to wrap our heads around the idea.

Today we were told that the transplant team in Texas needs to see Samuel and Hannah on Monday (or Tuesday at the latest) for further screening and evaluation. That is 3 days from now! Okay, deep breath, we can do this! Lots of scrambling, lots of phone calls, and we are scheduled to fly out tomorrow at 5:30 p.m. We’ll have Sunday to relax and then we’ll report bright and early at 7:00 a.m. to the clinic at the Texas Transplant Institute in San Antonio. They claim to be “the nation’s largest and most experienced living donor kidney transplant program.” Sounds like a good place to be! They will arrange for Samuel to dialyze on Monday after a series of appointments for him and Hannah. We will fly back home on Tuesday afternoon.

If everything goes well for Samuel and Hannah (and all the other pairs), we'll be flying back down to San Antonio sometime before the transplants which are scheduled to take place over a 3-day period starting on November 11th.

So yeehaw, we’re off to Texas!! Just another example of the Lord's lovingkindnesses! Just another episode of the Smith Family Kidney Adventure!

Struggles and Surrender

2010-10-21T13:39:00.003-04:00

Samuel and I spent another night in the emergency room, so if I sound a bit more discouraged than usual it is likely due to missing two nights of sleep this week. Another contributing factor would be my concern for Samuel. He is really in a hole. I am struggling not to be controlled by my emotions and lack of sleep.

The purpose of last night's visit to the ER was to get control of Samuel's migraine (which had escalated to a whopping "10" on the pain scale) and to lower his blood pressure. Pain is a horrible thing. While he has had some degree or another of a migraine for almost 3 weeks, yesterday's escalation was likely triggered by having had an extra amount of fluid removed during dialysis.

Samuel has been arriving in dialysis at about the same weight each time. Because he has been eating so poorly for some weeks now, we started to suspect that less of his weight was flesh and more of it was fluid. So while the number on the scale was relatively consistent, we suspected that his dry weight was actually much less than it had been. That could be contributing to his blood pressure being high.

They are always hesitant to challenge him with too much fluid removal because of his body's sensitivity to fluid shifts, but since he was already in a bad way during dialysis yesterday, we decided to see if there was extra fluid that could be removed. It is only a matter of adjusting the fluid removal goal on the dialysis machine. They could have pulled off more, but they stopped at 2.3 liters, which would seem to confirm that he has been carrying extra fluid and that his dry weight has dropped significantly.

It is likely that this fluid challenge is what landed him in the ER. If we end up with a more accurate idea of his actual dry weight and if it ultimately means his blood pressure will be better managed, then it will have been worth it. I can say that objectively, but I am not the one who was in physical agony for hours last night. Mine was the silent pain of a mother's heart breaking as she helplessly watches her child suffer.

Today is a repeat of Tuesday's day-after-a-night-in-the-ER. His headache is "only" a 7.5 and the emesis basin is his constant companion. He has been unable to eat and looks like a walking skeleton. Mostly he is trying to sleep.

Plans for the paired exchange continue to move forward. Things are getting complicated. We don't know much and what little we do know, we have been asked not to share. Everything is still too tentative to announce. It would appear that we will be asked to step way outside our comfort zone. We are grateful for this time to process and prepare.

All of this will be for naught if Samuel is not well enough to undergo and recover from a big surgery. Everyone recognizes that a new kidney is what he really needs to be well, but of course, they won't allow him to go through with the transplant if he isn't well enough to handle it.

Lord, I place Samuel, his health, his life in your hands. I trust you to provide what he needs in your perfect timing. Give me your grace and peace that passes understanding to accept whatever is ahead - both the good and the bad. Thank you, Jesus.

Struggles and Hope

2010-10-19T23:22:00.003-04:00

Well, yesterday's long day turned into a long night. Samuel went from dialysis to the emergency room after multiple unsuccessful attempts to lower his blood pressure. Eventually, his pressures were low enough that we could stop worrying that he would blow a gasket. It was 2:30 a.m. before he could safely leave the ER.

Samuel slept most of today and tried to recover from feeling like a Mack truck had run over him. It was my job to monitor his blood pressure to be sure he was safe.

Late this evening we got the very welcome news that Hannah had a negative cross-match with her potential recipient and Samuel had a negative cross-match with his potential donor. Hallelujah!

Now we must sit tight and wait for further instructions. All other pairs (and there may be quite a few!) must also have negative cross-matches. There are still a myriad of details to be worked out and many critical components to be completed. One of the very necessary pieces yet to happen is that our surgeon here must receive an official offer of a kidney for Samuel from the NKR. This is the first time that the folks at Fletcher Allen have worked with the National Kidney Registry, so we are all learning as we go.

We are holding it all with an open hand and praying, may your will be done, Lord Jesus.

Happy 500th!

2010-10-18T19:10:00.002-04:00

Today was Samuel's 500th dialysis treatment! Can you believe it?? We had a little party in dialysis to commemorate the occasion. Thanks to Lydia for baking a boatload of cookies last night! Samuel's friend and co-dialysisee, Josh, was in the next station right alongside Samuel as usual. Josh makes any occasion more fun! Kevin, who was at Samuel's very first dialysis session, came with another old dialysis friend, Ryan. It was great to see the boys together! Did I take any pictures?? Of course not!! I'm rather annoyed with myself!

Samuel got clobbered with yet another migraine. Recently he has been getting a migraine during almost every dialysis treatment. It has been a difficult couple weeks for him. He was able to enjoy some of the festivities today with a little help from dilaudid.

It is now the end of the day and most everyone has gone home. We have been here since 11:30 this morning. We are still here in dialysis because Samuel is having a hypertensive crisis and they are trying to get his blood pressure under control with some IV meds.

It has been a long day of mixed emotions...sadness that Samuel has been doing this so long, thankfulness that he is doing this with such a great team of caregivers, and excitement that he might not be doing this for much longer.

Blood samples from Samuel and Hannah were shipped out today for cross matching. We are hoping to have some more information by Wednesday.

Cross-Match Delayed

2010-10-15T23:27:00.004-04:00

They ended up not drawing blood from either Samuel or Hannah this afternoon. There were concerns about the samples being safely delivered on a weekend and, having been on dialysis, Samuel's blood was heparinized, which is not what the lab wanted. So...everything has been put off until Monday morning. That means we probably won't know anything more until the middle of next week. Rats!

Well, I guess we've waited this long and can wait a little while longer. I'll have to keep myself busy this weekend (that shouldn't be too hard!) so I don't think about it too much. It is still a huge uncertainty, but it is hard not to get excited.

Possible Kidney for Samuel...Please pray!

2010-10-15T13:31:00.003-04:00

Dear friends,

I just got a phone call from our transplant team. It seems there may be a paired exchange chain through the National Kidney Registry that could include Samuel and Hannah. This is exciting, awesome, incredible news! It is the very first and only time that Samuel's name has come up with a possible match. Due to having a very high number of antibodies, Samuel has been incompatible with 95% of the population for a long time. Last week we learned that since September, he has been incompatible with 99% of the population. So the fact that there might be a donor for him is something close to a miracle!

Nothing is for sure at this point. Hannah is on her way up to the hospital right now to have labs drawn for a cross-match with her potential recipient. Samuel is in dialysis at the moment and will have labs drawn to be sent off for cross matching with his potential donor. A chain is a fragile thing. If one link (donor or recipient) fails, the whole chain may fall apart. At this point we can only pray, ship blood samples, and wait to hear the news.

Please do join us in praying that both Samuel and Hannah would have negative cross-matches with their respective donor and recipient. We should hear about the results of the cross-match some time this weekend. I'll let you know. Pray that we would praise God, no matter the outcome.

Happy 3rd Anniversary! Happy 23rd Birthday!

2010-03-23T22:51:00.003-04:00

Today marks the third anniversary of Samuel's first dialysis treatment. Our kidney adventure officially began on March 21, 2007 when we heard the words "kidney disease" for the first time. Two days later, on March 23rd, Samuel was on dialysis! It happened to be Katie's 20th birthday and we gathered in Samuel's hospital room that evening to celebrate. Since then, we have celebrated quite a few birthdays in the hospital, but today I am thankful that we were all together at home to celebrate Katie's 23rd birthday!

In that first week of dialysis, I put together a notebook in which to collect information and record details of each dialysis run. A few weeks after Samuel started dialysis, both Katie and Esther were diagnosed with the same kidney disease. I labeled my notebook "Smith Family Kidney Adventure." Little did I know how appropriate that would be! These last three years have turned out to be quite an adventure for our family! That notebook has been filled and refilled many times. Between us, we have had ten surgeries and countless medical procedures. Samuel alone has had 410 dialysis treatments and five surgeries. I couldn't begin to count the number of hours we have spent in the hospital.

Through it all, God has been gracious to preserve the lives of our children and faithful to supply our needs. It has been a difficult time, but we know that He is using it for good, both in our lives and the lives of others. We have learned so much and have been blessed to meet and work with some wonderful people.

I haven't posted in a while, but that doesn't mean things have been quiet. There is much to report, but I will have to save it for another evening. Stay tuned...

It's Great to be Home!

2010-01-29T21:40:00.000-05:00

Well, that was quite a start to the new year! Esther was in the hospital for 29 of the last 37 days. We pretty much missed January altogether. But we are home now and so happy to be here! It is as if Esther has come alive again. She is up and walking around, talking constantly, animated, happy, and in charge, as usual!

I, on the other hand, have collapsed into a pile in the recliner. I'd be up in bed, but it is much warmer downstairs. I had a long nap this afternoon, another one this evening, and I'm more than ready to head to bed for the night. Another day or two of lying low and I'll be back in the game.

It is SO good to be home!

We're Heading Home Tomorrow!

2010-01-28T22:54:00.009-05:00

Esther has had two days of stable labs and two days of drinking 3+ liters! Today she even had a slight increase in her red blood cell count! Except for the times when she was receiving medications, Esther has been detached from her IV pole all day. Tomorrow morning's labs will give us the first indication of how she is doing without the 3.6 liters that she has been receiving each day for her maintenance IV fluids. Assuming her labs look good, she'll be allowed to go home on Friday, which is a couple days sooner than projected!!

The antibiotic switch that the doctors talked about doing never happened. They thought that things were working well and decided not to mess with it. Esther has received a dose of IV antibiotic every 8 hours for the last 11 days. She'll likely have another dose in the morning before being discharged. The doctors believe that will be enough so she won't have to continue the IV antibiotic at home. She will have to stay on the oral antibiotic for the C. diff.

Even though she won't be continuing the IV antibiotic, Esther will be going home with the PICC line still in place. It will make the outpatient lab draws much easier for the next week or so. The PICC line will also be used next week to give Esther some extra Epogen. We'll be glad to have it if she should get into trouble and need some extra hydration.

Esther and I are both very excited to be going home. I am looking forward to being together again as a family. Because of H1N1 and RSV concerns, the pediatric floor is "closed" and visitors have been severely restricted. I also can't wait to sleep in my own bed. Most of all, I am hugely relieved that Esther is well enough to leave the hospital! She still has some recovering to do, but time, rest, and antibiotics should do the trick.

Thanks to all of you who have left encouraging comments on the blog or sent cards or emails! Thanks to those of you who have prayed us through another crisis! We are tremendously grateful for your love and support. Special thanks to Grandma Peach who sent Esther some comfy shirts and pants which she has been living in during her hospital stay. Thanks also to Joanne and Janina for teaching my Latin classes for me these last two weeks! Blessings to you all!

We're going home!

Tuesday's Report

2010-01-26T23:30:00.006-05:00

On Monday, Esther had an ultrasound to check the status of her large intestine. The infection of the bowel wall is clearly resolving. There is only a trace of inflammation left. That was great news!

I was very surprised to be told yesterday that Esther will probably need to be in the hospital for another week. At least it is encouraging to be talking about going home. The doctors have put together a list of some things that need to be accomplished before she can be discharged. The three main things are:

1) Esther's electrolytes must be balanced and be able to stay balanced without help. She has required IV supplementation of calcium, magnesium, and phosphorus multiple times.

2) Esther's red blood cell count must be stable or on the rise. It has been on a steady downward trend due to the intestinal bleeding. Unfortunately, she has lost almost everything that she gained through the transfusions last week. Yesterday she was down to the point where (for most people) a tranfusion would be considered. They have really been pushing her bone marrow (where red blood cells are made) with daily doses of Epogen. Finally today her RBC count went up a bit! We're praying that this will be the beginning of an upward trend.

3) Esther must be able to consistently drink 3 liters each day. This is the only part of the discharge plan that she has any control over and she's done a great job. Both yesterday and today she got 2.5 liters down.

In addition to the IV antibiotic to combat the intestinal infection, she is also being treated with a second oral antibiotic for the C. diff. In the next day or so, they will be switching Esther from the IV antibiotic to an additional oral antibiotic so that we won't have to mess with the IV meds when we are at home.

As expected, Esther tires quickly. Her threshold for anything unpleasant or difficult is extremely low. The smallest things frustrate her and can escalate into tears. Yesterday, after a long and exhausting trip downstairs for the ultrasound, Esther had to battle with the IV pole to get into the bathroom where she then had to take some nasty medicine that burns her canker sores and tastes like rotten bananas. Shortly thereafter, the nurse came in to do a finger prick to check her glucose. It was the last straw for Esther. She had a meltdown right then and there. She absolutely refused to let the nurse poke her. After reaching an impasse, our compassionate nurse found a way around and no poke was required.

Esther's heart rate is still consistently too high. To attempt to address this, she got two one-liter boluses in addition to her maintenance IV fluids on Saturday. Today she got one extra liter.

Overall, Esther is greatly improved. She is feeling better and eating well. She spends more time in the recliner than in the bed during the day. She is walking longer distances. We are hoping that with today's increase of red blood cells, it might not take a whole week before she is well enough to go home. As eager as we are to get out of here though, no one wants to leave too early and have to come right back again, so the docs will be sure that she is really ready before they send her home.

By the way, Esther's kidney is holding up very well under the present circumstances. It is happy with the constant supply of IV fluids that Esther receives. Dr. Guillot always says, "A hydrated kidney is a happy kidney!" Between the maintenance IV fluids, the one-liter bolus, and what Esther drank, the kidney will be very happy processing 7.2 liters from today. The real test comes when her kidney has to work harder because she is eating more and drinking "only" 3 liters a day.

Short and Sweet

2010-01-24T20:30:00.002-05:00

This needs to be short because I am so tired that I can barely keep my eyes open.

It is sweet because Grace was a love and made time to bring Click to the hospital to visit Esther today. Poor Esther had a meltdown on Friday - lots of pent-up frustrations and sadness. One of her issues was that she was missing the dogs. With a little negotiating, we were able to get permission for Click to come.

Thank you, Grace! What a nice big sister you are!!

The other sweet news is that after 2 days of some scary intestinal bleeding, Esther is doing better. She is eating and is much more engaged in life.

That's it for me tonight!

The Good and the Bad

2010-01-21T23:40:00.002-05:00

Yesterday brought both good and bad developments. As expected, Esther's echocardiogram was fine. And best of all, she didn't have a fever all day!

The difficulties yesterday included the progression of the typhlitis. Esther developed some of the clinical signs that come with typhlitis - abdominal pain and bloody diarrhea. It was a confirmation of the diagnosis, but something I had hoped to avoid since Esther has been on antibiotics since Monday. She was able to sit up in a recliner for a few hours in the evening. We watched some television together and chatted. During the night, the pain made it difficult for her to sleep.

Today was harder. Esther just didn't feel well and didn't get out of bed except to use the bathroom. Her canker sores make it so hard for her to take some of the required medications. She was understandably irritable and teary. She wasn't up for even trying to eat until dinnertime.

The typical course of treatment for typhlitis includes giving the gut a rest by not eating for several days. The medical team is hesitant to require that of Esther because she is already behind nutritionally after being sick for the last three weeks. They recognize the importance that nutrition plays in her body being able to heal. She may end up fasting on her own because eating makes the pain worse. They are monitoring the situation and will make adjustments as needed.

Esther's labs were off today and she was given some IV magnesium and phosphorus. Her potassium was too high, so they have changed the composition of her IV fluid. Hopefully, we'll see the results of these changes in tomorrow's labs.

In addition to checking her vitals, a nurse or resident comes every four hours to feel her belly. As long as it remains soft and squishy, she is not in danger. If her belly were to become hard and stiff, it would be a sign that there has been a perforation of her bowel. That would be very bad. Soft and squishy is good.

Wednesday Morning

2010-01-20T08:42:00.001-05:00

Wow! Four hours of sleep, a shower, and tapioca pudding for breakfast. It's gonna be a good day!!

And...it's Grace's 19th birthday!

Happy Birthday, sweetie! You are an amazing person and I am very proud of you! I love you!

A Quiet Day

2010-01-19T22:30:00.002-05:00

Another day in the hospital...Compared to yesterday, today has been nice and quiet. Esther tolerated the blood transfusions last night without complications and some of her lab values looked much better this morning.

Early this morning, Esther had an echocardiogram. The machine was brought right to her bedside so she was able to pretty much sleep through the half hour procedure. It was scheduled yesterday even before the flip-flopping episode in the recovery room. Bacteria in the body can sometimes migrate to the valves in the heart. No one is expecting there to be any problem with Esther's heart, but the doctors thought it would be wise to double check. I haven't yet heard the results of the scan.

Despite the Meropenem and Tylenol, Esther continues to sometimes act feverish, even when her temperature is normal. At one point today when she wasn't registering a fever, Esther was sleeping on her back with the blankets pulled up to her chin. As usual, a floor fan at the side of her bed was blowing directly on her head. Her cheeks were bright pink and hot to the touch. Her tousled hair framed her freckled face. She looked very peaceful, even angelic, lying there in the bed. If you knew how miserable and unhappy she was yesterday, you would appreciate today's angelic look even more. (smile!) When she woke up, both she and her bed were soaked with sweat.

The infectious disease doctor dampened my excitement a bit today. I was very glad to finally have an explanation for the weeks of sickness. I was ready to take it on, conquer it, and get Esther home and healthy. After yesterday's findings, the good doctor was still not confident that we know everything that is going on with Esther. Sure enough, this afternoon we got results from yesterday's fecal culture. Esther has C. diff. That is discouraging news! They have added a second antibiotic to her list of medications to try to knock it out. At this moment, it appears that the C. diff is in addition to whatever is causing the infection in Esther's gut. Hopefully more time and information will reveal all.

The other troubling issue that needs clarification is the cause of Esther's canker sores. When I say that Esther has canker sores, I am not referring to everyday, run of the mill canker sores. These puppies are huge! And they hurt a lot! She has recently developed some new ones. This often makes eating and drinking difficult for her.

Someone asked about sending emails to Esther in the hospital. I can't get the in-text link to work right now, so look for a link down in the column on the far right. From there you can follow the directions and send an email to Esther. I'm sure she'd love to hear from many of you. Esther's room number is Baird 586.

An Intense Day

2010-01-18T23:44:00.006-05:00

It has been a very long day and it is not over yet. The good news is that we have a diagnosis and a plan of attack. An ultrasound of Esther's abdomen this afternoon revealed that the wall of her large intestine is thickened and inflamed. The diagnosis is typhlitis. It is "a life-threatening, necrotizing enterocolitis occurring primarily in immunosuppressed patients." (www.uptodate.com)

Bottom line...Esther has an infection in the wall of her large intestine. It is suspected that her rejection treatment over Christmas, which caused her to be highly immunosuppressed, set her up for this infection. The average mortality rate from typhlitis is supposedly 40-50% due to perforation, bowel necrosis, and sepsis. I don't believe that Esther will be in this 40-50%. Despite having been sick for the last three weeks, I think that we have caught this on the early side. Esther's belly is still soft and she is not complaining of abdominal pain. It is, nonetheless, a serious condition and will likely require 3-4 weeks of IV antibiotics. Until they can culture a specific bacteria, Esther is being treated every 8 hours with a high-powered, broad spectrum antibiotic called Meropenem.

Esther's electrolytes are out of whack, so she is receiving IV doses of both calcium and magnesium. She is also severely anemic, with a hemoglobin of 5.7 (normal range is 13-16). She has been anemic for awhile and was being aggressively treated during her last hospital stay, but to no avail. Now her red blood cell count is even lower. Apparently, the bone marrow shuts down production of red blood cells when there is an infection in the body. Dr. Guillot made the difficult decision to transfuse Esther with two units of packed red blood cells. Introducing blood products is risky for several reasons, but it is an especially unpopular subject in our family because of the possibility of developing sensitivities to additional antigens. Samuel has been unable to get a transplant because of this exact issue. Thankfully, Esther has a lovely, functioning kidney and, Lord willing, won't be needing another one any time soon!

The two units of blood will tranfuse over 6 hours. Esther will have to be monitored closely, so the nurse will be coming in to do vitals every half hour through the night. Those visits, combined with the fact that I will be "sleeping" in a recliner, are likely to make for a very long night.

The intensity level has been a bit high today and got even higher while Esther was in the recovery room after having the PICC line (percutaneously inserted central catheter) placed. They had just started the antibiotics when Esther commented that her heart was flip-flopping and that it was making her head hurt. Dr. Guillot was able to hear it happening and once Esther was hooked up to the heart monitor, we could watch it happening. Suddenly there were a lot of questions. Was she having a problem from the anesthesia? Was she having a reaction to the antibiotics? Had the intestinal bacteria migrated to her heart? They told me that Esther would be going to the ICU so she could be more closely monitored than on Baird 5. Eventually, they realized that the end of the PICC line was too far in and it was irritating her heart. They undid all the bandaging and tape and pulled the line out a few centimeters. That fixed the problem! Big sigh of relief!

It is much too early to predict how long Esther will need to be in the hospital. Hopefully, she will respond quickly to the treatment. Once she is well enough to go home, we can continue the IV antibiotics at home using the PICC line.

Tom and I are extremely grateful that we now know what we are dealing with. It has been a long three weeks of fevers, diarrhea, dehydration, and a revolving hospital door. I spent hours on the computer this weekend searching for possible explanations because I wasn't satisfied with the diagnosis that we had been given on Friday when Esther was in the ER for rehydration. I was told that she probably had a Coxsackie virus. I did not agree. I was concerned that the doctors were content with this Coxsackie diagnosis and would stop looking for something else. When I brought Esther back in to the hospital this morning because her fever was high and her pulse was even higher (160!), I was prepared to insist that they keep digging. Thankfully, they saw the need themselves and worked quickly to arrange further testing. This afternoon I asked our Bible study group to pray specifically that the source of the fevers would be revealed so that it could be addressed. We are so thankful to have such a quick and specific answer to this prayer! God is good!

Well, I started writing this post at 11:45 p.m. and it is now 3:45 a.m. It has been a busy night. While we are waiting for the second unit of blood to arrive, I should try to close my eyes for a bit. I am still running on adrenalin.

In the Hospital Again

2010-01-18T10:22:00.003-05:00

Esther is back in the hospital up on the pediatric floor. We came in this morning through the ER. We can't safely manage her at home anymore. The fever is causing too much dehydration and she is just too sick.

Esther has a temporary IV in her fistula and will be going down to Interventional Radiology this afternoon to have a PICC line put in. That will give good, longer term access and she won't have to be stuck everytime they need to draw labs.

They are running more blood tests and cultures and will be doing a series of abdominal ultrasound scans, but beyond that, I don't yet know what the plan is.

Stay tuned and please be praying for my poor pup.

You'll Never Guess Where We Are!

2010-01-15T14:11:00.002-05:00

After being discharged on Wednesday morning, Esther started right back with a fever on Wednesday night. By Thursday morning, she was back up to 102+. There was still an unanswered question about whether something like a hidden tooth abscess could be causing the fever. In order to answer that question once and for all, I had to drag Esther out to the dentist for x-rays. Can you believe it? I actually had to get out of bed on Thursday! That certainly wasn't in my plans for yesterday!

Esther's teeth look great - no abscesses, no infection, no cavities - only several very large canker sores that have been plaguing her since her acute rejection treatment over Christmas. The dentist said they were the biggest canker sores he has ever seen in his life. Sometimes it is not fun to be special! Esther laid low after our outing and did a super job of drinking almost 3 1/2 liters. Tylenol kept her fever down, but not all the way.

This morning Esther couldn't stand up without blacking out. Her blood pressure was low and her heart was racing. She still had a low grade fever. We came into the hospital as scheduled for routine lab work and a clinic visit. After three attempts, the phlebotomist had only collected a very small amount of blood - not enough to run all the lab tests. They gave up in the lab and sent Esther on to clinic. Once there, the docs did a quick assessment and promptly sent her to the ER. Her creatinine has taken a jump up since being discharged on Wednesday. It appears that she is dehydrated yet again.

Dr. Guillot kindly came down to the ER and put an IV into her fistula. They didn't think they could get an IV in anywhere else. Normally the fistula, and even Esther's whole left arm, is totally off limits for IV's, lab sticks, and blood pressures. Very few people in the hospital are authorized to access a fistula. Thankfully, Dr. Guillot is one of the few and she got the job done without Esther having to be tortured.

Esther is currently receiving her second liter of IV fluid. Once that is in, they will reassess to determine if she needs a third. Even though she drank 3 ½ liters yesterday, it seems it wasn't enough to keep up with what she lost as a result of the fever. Initially, they said she would be admitted, but now, thankfully, word is that they will let her go home after all the fluids are in. We sure hope so! Esther is not happy about being here!

Home Sweet Home

2010-01-13T18:25:00.007-05:00

We're so glad to be home! Esther and I were ready to go by the time Tom and Samuel finished up with dialysis, so we all left the hospital together. Two kids, two wheelchairs. We were home in time for a quick lunch and then Esther and I collapsed together on one couch and took a 3-hour nap. Samuel had a bad headache and was feeling awful after his dialysis session. Upon arriving home, he walked directly from the car to the couch, only pausing briefly to shed his shoes.

Samuel slept like this for about 6 hours today. This is actually a common sight on Mondays, Wednesdays, and Fridays. Samuel is regularly sick after dialysis and often spends the afternoon sleeping it off. Apparently, the coat-over-the-head is to keep out light.

After some unpacking, kitchen clean-up, and laundry, I'm jammied up and nestled comfortably in my bed. Yes, a bed, a real bed! It's heavenly! Esther is asleep beside me. I may never get out of bed again!

Before I can go to sleep though, I have to email some homework assignments to my Latin students. A sweet friend substituted for my weekly Latin classes yesterday. Thank you, Joanne!

If you are wondering about our late night escapade last night, we had even greater success with our mischief, I mean mission, than expected. Our accomplice in the crime was a pediatric resident who knew the secret code needed to gain access to the administrative wing. (Thanks, G.!) Instead of leaving Esther's water bottle collection outside the good doctor's office as planned, we arrived to find her office door wide open. We tastefully decorated her desk with the empty water bottles and left her a little love note. It was fun and our good-humored doctor had a good laugh this morning when she came into work. It was a nice diversion after having to behave myself for all those days in the hospital.

Oh, and if you are wondering why we spent all those days in the hospital and how a simple rehydration treatment turned into a fever and a 10-day hospital stay...you'll have to keep wondering. The final diagnosis was "fever of unknown etiology", which simply means Esther was sick, but they don't know why. Every test and culture that they did came back negative. No specific bacteria or virus could be identified. Of course, they can't possibly test for every possible pathogen, so something caused Esther to be sick, we just may never know what it was. And in the end, it doesn't really matter. She is getting better.

Delayed Gratification

2010-01-12T22:07:00.004-05:00

Well, we will be going home, but it won’t be tonight. With the IV still in place and supplying 150 ml per hour, we did a test run today to see if Esther would be able to drink enough. The goal for today was 3 liters and Esther did it! But it was 9:30 p.m. by the time she reached her quota. Given the hour, the cold, the dark, the fact that my van is in a parking lot somewhere covered in snow, my state of exhaustion, and the fact that Esther would have to turn around and come right back to the hospital first thing in the morning again for labs, we’ve chosen to stay put for the night.

Esther needs to get up and walk laps around the pediatric floor every couple hours. For a change of scenery and a bit of mischief, we are thinking about sneaking out and down the hall to leave Esther’s eleven empty water bottles in front of her nephrologist’s office door.

We're all packed and will be ready to blast out of here tomorrow morning!

Going Home?

2010-01-12T08:15:00.003-05:00

Esther made good progress yesterday! By evening, she was much steadier on her feet and had more of an interest in eating. Still some recovering to do, but she doesn't need to be in the hospital to do it. I think the biggest challenge for her will be drinking enough to stay well-hydrated. Once the IV comes out, she'll need to drink 4 liters a day.

We have to wait for lab results and official marching orders, but we expect to be able to go home later today.

Sunday Update

2010-01-10T12:24:00.003-05:00

After 40 hours of fever, Esther turned a corner last night and is doing better today. She is weak and continues to have diarrhea but, hopefully, the worst is over. The transplant surgeon stopped in earlier and is pleased with her lab results from this morning, but is still cautious and withholding judgment until today’s results become a trend and not just a one-time blip.

We are still waiting for the results from many lab tests and cultures but, in the meantime, the docs have been treating Esther as if she had some of these things, just in case. There are a couple pathogens that the doctors were able to rule out. One of those was C. diff (Clostridium difficile). Praise God! Samuel has had it and it is nasty! While the whole pediatric floor is “closed” due to H1N1 and caregivers are supposed to be the only visitors, they imposed extra handling precautions on Esther for a day while they waited for the results of the C. diff test. Again, we are very relieved that she doesn’t have it and that she’s been released from her “isolation”.

Esther is on four different immunosuppressant drugs. In addition, she was blasted over Christmas with IV steroids after biopsy results showed that her body was trying to reject the kidney. These extra drugs did their job of stomping all over her immune system and stopping the rejection, but her now highly immunosuppressed state has made her vulnerable to opportunistic pathogens. To give her body some chance of fighting off this illness itself and to lower some drug levels that were too high as a result of altered absorption, the doctors have temporarily stopped one of her immunosuppressant drugs and reduced the dosage of two others. At this point, we don’t know if it is the medications that they have given, the medications that they haven’t given, or just time and hydration that have made the difference for Esther. It is too early to tell if her improvement is “real”, as they say. More time, more lab results, more fluids, more prayers are all needed.

Temporary Setbacks

2010-01-08T08:30:00.002-05:00

Last night's plan was for Esther to be discharged this morning after confirmation that everything looked good with the morning labs. Unfortunately, Esther spiked a fever in the middle of the night and is now quite sick. The docs are running more tests, changing medications, and calling in an infectious disease specialist. So we're back to square one. We'll have to wait and see what today brings.

Speaking of square one, another potential donor for Samuel was disqualified this week. This person wasn't compatible with Samuel directly, but he was willing to donate on Samuel's behalf through the the National Kidney Registry and their program of arranging paired exchanges. You can read about the work they do here: http://www.kidneyregistry.org/living_donors.php#welcome

What a pile of emotions come along with news of this setback!

~ Disappointment that it didn't work out yet again.

~ Sadness that that light at the end of the proverbial tunnel just got smaller.

~ Concern for Samuel. Dialysis is hard on the body. Long-term transplant outcomes decrease the longer one is on dialysis.

~ Grief for Samuel. He is longing for a transplant.

~ Relief that someone we know and care about won't be put at risk or suffer pain as a result of donating.

~ Thankfulness that the Lord used the screening process to reveal a potentially serious health issue for the donor.

~ Confidence that, if not this person, the Lord must have someone else in mind as a donor for Samuel.

~ Gratitude for the incredible selfless generosity of this would-be donor and the many, many others who have been willing to make the sacrifice for Samuel (and Esther and Katie!). These folks are heroes to us whether they end up being able to donate or not. How very grateful we are to each of them!

A special thank-you today to you, Chris. May the Lord bless you richly for your willingness to give such a precious gift!

Tom brought Samuel in this morning for his usual dialysis treatment. It is number 379, but who's counting? In the darkness of the early morning dawn, Tom and I were both able to look out our brightly lit hospital windows and wave to each other across the dark abyss between the two buildings. It was a bit surreal. I hate having two children in the hospital at the same time!

And She's in the Hospital Again!

2010-01-06T13:32:00.002-05:00

Creatinine is back up. Could be a result of dehydration, could be caused by a high Prograf level. Either way, Esther is once again a patient on Baird 5. We currently have a roomful of IV nurses who are trying to find a good vein to use for an IV - two unsuccessful attempts so far.

The plan is to continue the rehydration. We expect it to be a short stay.

And She's Home Again!

2010-01-05T20:07:00.002-05:00

Esther received four liters of IV fluid while in the hospital and her kidney is now a bit happier. Creatinine is down to 1.20. Esther came home this afternoon and is under strict orders from the doctor to drink another four liters before bed. It will be a challenge for her.

We'll go back in for labs in the morning to be sure the treatment is doing the job. So grateful that simple H2O is the medicine of the day!

Have YOU had a glass of water lately?

It's a Revolving Door!

2010-01-04T20:52:00.002-05:00

Esther went back to the hospital this afternoon. Thankfully (and hopefully), it is only for the purpose of rehydration. We and our house guests were hit with a violent and virulent stomach bug beginning on New Year's Eve. In a houseful of 19 people, 16 of us got it over the course of 4 days. Two of our guests had already had it. That means, out of the 19, only one remains standing. Go, Kathryn!! Unfortunately, we also know of a couple others who are now sick after being at our house briefly over the weekend. It was quite a nasty bug with an incredibly short incubation period! We were washing hands like crazy, but alas, to no avail.

Amazingly, Esther was one of the last ones to become ill but, as a result, got quite dehydrated. I'll spare you the gory details of how she came to be so dehydrated. She is back up on Baird 5 getting plumped up with fluid. She has lost nearly 8 pounds since she was last weighed when she left the hospital on Wednesday and her creatinine is back up at 1.70. It was last 1.02. Tom took her up this afternoon and is with her now as I am still recovering. Hopefully, they'll get her fixed up and she'll be back home again tomorrow.

Never a dull moment!

P.S. We managed to have a great time with our friends despite all the throwing up. It will be a New Year's not soon forgotten!

We're Packing Our Bags!

2009-12-30T14:17:00.002-05:00

Esther's fever broke sometime during the night. Hallelujah! Still no specific information about what caused the fever. All tests and cultures have been none conclusive. We will probably never know the cause and that is okay with me as long as Esther is better. Thankfully, her creatinine is back down to a great level.

We are packing our bags and waiting for our marching orders. Esther's IV needs to be pulled and some prescriptions need to be filled. Then we are busting out of this joint!!

Thank you for your prayers! We are praising God for such a short hospital stay!

Tuesday Update

2009-12-29T21:00:00.002-05:00

Esther is doing better. She still has a fever, but it is not as high. She is sitting up more and was able to eat a little for dinner. The docs still don't know what is causing the fever, but they are treating her with antibiotics and an antiviral to cover all bases. To add insult to injury, Esther has a mouthful of canker sores, likely the result of being more immunosuppressed after the three big doses of prednisone.

This morning was hard for Esther when they needed to replace her IV and had difficulty getting a new one started. After three sticks and three false starts, they took a break and let her rest before coming back with a portable ultrasound machine. That helped them locate a deeper useable vein and they had success at last! Poor Esther is feeling a bit like a pin cushion. Because of her fistula in her left arm, only her right arm can be used for blood draws and IVs. She has had a lot of both of those since her transplant and her right arm is a little beat up. It doesn't help matters that she has tiny veins. And, of course, everything is harder when one feels awful and has a rip-roaring fever.

Saturday’s labs showed that Esther's creatinine was responding nicely to the prednisone blasts and that it had dropped back down closer to where the docs like to see it. Today her creatinine popped up a bit, but the docs think the elevation could be caused by the fever and slight dehydration from yesterday. Just to be sure, they set up a renal ultrasound for Esther this afternoon. I haven't heard the report yet, but I’m not expecting any bad news.

Because Esther is immunosuppressed, she always gets a single room when she is in the hospital. Yesterday when we arrived, they put her in a room that has two beds and I get to sleep in one of them! It is a real treat! At times like these, I'm especially thankful for small blessings.

Back in the Hospital

2009-12-28T18:30:00.002-05:00

Esther is in the ER right now waiting to be moved up to the pediatric floor. She is quite sick with a fever. She just had a boatload of prednisone (500 mg for 3 days and 60 mg for the last two days) which has suppressed her immune system even more than usual making her vulnerable to any and every virus. The fact that she is mounting a fever after so much prednisone (which is an anti-inflammatory) is a concern. She is being admitted so the docs can run some tests, monitor her, and treat her.

Between labs, a biopsy, three prednisone infusions, and this fever, Esther has been in the hospital five of the last six days. This looks like it will be a little longer stay than the others. Are we having fun yet??

Biopsy Results

2009-12-24T21:26:00.005-05:00

Biopsy results show that Esther has low grade rejection which is the best (or least worst?) of the bad possible scenarios. Tomorrow morning she'll go back to the emergency department for another 500 mg of methylprednisolone. They'll have to first put in an IV, which can be a challenge with Esther's limited access. The whole process will probably take about 3 hours. Esther and I will miss the Christmas caroling at the nursing home, but we should be able to make it to Hartland for Christmas dinner. Tom will already be there with the other children.

Esther will have a third dose of the methylprednisolone on Saturday. As much of a bummer as this is, we know that things could be much worse and are thankful that the rejection is not severe. This year's Christmas crisis seems easy compared to the Christmas two years ago that I spent in the ICU with a very sick Samuel.

The following blessing was written by a friend who also has a child with kidney disease. It expresses my sentiments exactly.

"Our hope for each of you this Christmas is that you get to experience the JOY that comes from knowing Jesus Christ as your Lord and Savior, the PEACE that comes from trusting Jesus Christ to comfort you when nothing else can, and the HOPE that comes from knowing only He can meet your every need."

Merry Christmas!

An Unfortunate Change of Plans

2009-12-24T10:36:00.002-05:00

Esther and I are spending Christmas Eve here at the hospital. I brought her in this morning for a kidney biopsy after lab results yesterday showed a significant jump in her creatinine. The docs suspect that she is having some rejection and they need to know the type and the degree in order to treat her effectively. Praise God, the biopsy went without complication and she is resting comfortably in the recovery room.

Specific results from the biopsy won't be available until this evening, but we just got news that her creatinine is even higher this morning. Not good! The original plan was to wait until biopsy result were available before starting treatment. Given the continued rise in creatinine, they have decided to give her a blast of IV prednisone here and now. This is the same medication/procedure that we did the day before Thanksgiving when she had her first rejection episode. I'm not sure why we keep colliding with the holidays, but nevertheless, that's where we are.

Because today is a hospital holiday and staffing here is low, Esther is going to be admitted to the pediatric floor for a few hours so she can be monitored while she has her infusion. The expectation is that she'll be able to go home later this afternoon.

Beyond that, Plan A is to bring Esther back to the hospital tomorrow and the next day as an out-patient for two more blasts of IV prednisone. If tonight's pathology report shows that she has a higher grade of rejection, we will switch to Plan B which would be to admit her to the hospital for a series of treatments with a different medication. This would involve being an in-patient for a couple days. We'll just have to wait until this evening's report to find out which plan we'll be following.

Well, you can imagine Esther's disappointment! For the last 12 years, we have had a tradition of spending Christmas day with dear friends in Hartland, Vermont. Plan A means Esther spends part of Christmas Day in the hospital allowing for the possibility of a modified version of our tradition. Plan B means she spends all of Christmas and beyond in the hospital.

I’ll let you know what happens.

P.S. Merry Christmas!

Happy Thanksgiving!

2009-11-25T22:26:00.002-05:00

Wow! It has been 10 weeks since Esther's transplant! Life has been a bit hectic with Samuel and Esther both still needing to be at the hospital so much. It has been even more complicated with them each needing to be in a different place at the same time. Up until two weeks ago, Esther was still going to the hospital once a week for clinic visits and three times a week for lab work. She has actually gone a whole week between labs visits two times so far!

Tom has stepped up and is now often the one leaving the house at 6:15 a.m. to take Samuel to dialysis. The wear and tear of doing this 3-day a week routine for 2 1/2 years has taken its toll on me. The new arrangement allows Tom and Samuel to enjoy some time together in dialysis while I am able to focus on Esther and get her to her appointments and frequent lab visits.

Samuel has not been doing well the last few months. The frequent headache/sometimes migraine problem is back. He usually feels awful after dialysis and often sleeps away most of the day. Eating is also sometimes a chore for Samuel. He just feels lousey more often than not. The wear and tear of dialysis for 2 1/2 years has taken its toll on him!

Prayer request for Samuel - He needs a kidney! Please pray that the Lord would provide a kidney is His perfect timing. Things have gotten a bit complicated with Samuel having a high level of antibodies.

Praise report for Samuel - We recently learned that after months of being incompatible with 95% of the population, Samuel's level of antibodies has decreased a bit. No one has given us a specific number, but every step lower increases the possibility of finding a match for him.

Prayer request for Katie - After a textbook transplant in April 2008, Katie has had a very difficult time with her medications. There have been many issues and many attempts at finding the right cocktail of drugs. The latest medication problem started back in May when Katie began to experience terrible bone pain. Please pray for wisdom as the doctor tries to balance keeping Katie's kidney protected from rejection and perserving Katie's quality of life. There are a limited number of options for immunesuppression. The current cocktail is a bit out of the doctor's comfort zone.

Praise report for Katie - The current cocktail seems to be making a difference! Katie has been successfully (and comfortably) getting around without her cane for about a week. There are still medication adjustments to be made, but this is definitely progress!

Prayer request for Esther - It seems that Esther is having a rejection episode. After having lab work done this morning, we unexpectedly had to spend the rest of the day up at the hospital while they blasted her with a large IV dose of prednisone. Please pray that this treatment and the other medication changes that they are making will suppress her immune system sufficiently so that her body will tolerate the transplanted kidney. The docs will continue to monitor her closely and adjust their plans as needed.

Praise report - Esther had lab work done this past Friday and, because of the holiday, was next scheduled to have labs drawn again this coming Saturday. We are leaving town tomorrow and will be traveling back home late on Friday night. I knew that Esther would be exhausted and not want to go to the hospital early on Saturday morning and told the docs so. They kindly rearranged the schedule and, instead of making her come on Saturday for labs, they had Esther come in this morning. That is when they discovered that her creatinine was quite high. Often the success of reversing rejection is dependent on how quickly treatment is started. Praise God that we changed plans and went in today! Waiting another 3 days could have been disastrous!

I'm sorry that I haven't posted for almost two months, but I must confess that I have been a bit overwhelmed with life. I feel like I'm starting to refocus my sights on the Lord and that is making a big difference.

God is in control of all things and we know that we can trust in His purposes. “Shall we indeed accept good from God and not adversity?” (Job 2:10) The Lord is clearly using our kidney adventure to sanctify us and glorify Himself!

Happy Birthday, Samuel!

2009-09-30T23:10:00.004-04:00

Today was Samuel's 16th birthday! For the third year in a row, Samuel's birthday happened to land on a dialysis day. For the third year in a row, the amazing dialysis staff went above and beyond to put together a birthday celebration for him. One of our beloved nurses, Jane, baked a scrumptious carrot cake and came in on her day off. The room was decorated and someone had arranged for the Wii game system from Baird 5 to be brought down to dialysis so Samuel could have some fun playing it. Jane and several other nurses took turns playing tennis, bowling, and cow racing with Samuel. It was great fun! Many folks stopped in to share birthday wishes and a piece of cake. Dialysis is not a great place to have to be on your birthday, but Samuel couldn't have asked for nicer folks with whom to spend his birthday.

Bill, Betty, Samuel, Jane, Dr. Ann, and Esther...just a few of the folks at today's birthday bash. Thanks everyone for making the day special!

In other news, Katie came down with cold/flu symptoms very suddenly this morning and Lydia has a sore throat. We're washing hands like crazy and praying that no one else gets infected - especially Esther whose immune system just got stomped on! Samuel wasn't feeling well this evening and missed out on his birthday dinner, but hopefully that is something different.

Well, I had intended to fill you in on all that has happened in the last week since Esther came home from the hospital, but I am exhausted and really need to go to bed. I'll try to write again soon.

Samuel's birthday wish was to get a new kidney. We didn't get "the call" today, but lots of people get belated birthday gifts, right? Let's keep praying that that kidney comes soon!

Home Sweet Home

2009-09-22T22:08:00.003-04:00

Esther was indeed discharged today! After picking up her one-month supply of medications worth about $3,000 (ouch!), we arrived home at 5:30.

Five-year old Nicole has been staying at our house under Hannah's and Lydia's supervision since Sunday evening to allow Katherine to rest and recuperate at the hotel. On her way home this evening, Hannah picked up Katherine and we all had dinner together. When we realized how many one-kidneyed people we had at the dinner table, we decided we needed to take a picture.

Front row: Esther, Katherine, and Samuel
Back row: Katie and Tom

One very important person is missing from this photo and that is Kelly. She became a member of the one kidney club after donating to Katie in April 2008. We love you, Kelly, and are reminded afresh of your generosity!

The healing process is a little slower than Katherine expected and she needs some help getting herself and Nicole back to California. So today we made arrangements for Hannah to fly back with Katherine and Nicole. Hannah will stay for a few days to help out before flying back home. Hannah is busily packing her bag tonight and is excited about the trip. She and Nicole have spent a lot of time together over the last two weeks and have become quite fond of each other. They all fly out tomorrow in the early afternoon.

I don't expect to be posting as often now that the intensity has subsided, but I sure would be grateful for your prayers as the grind continues. For example, Samuel leaves the house at 6:15 for dialysis tomorrow morning (and every MWF) and Esther has to go back to the hospital to have labs drawn by 8:00 a.m. tomorrow (and will continue to have labs and clinic visits once or twice a week for a season).

Please continue to pray for a kidney for Samuel!

Healing Up and Heading Home

2009-09-21T21:39:00.003-04:00

Esther is doing great! She finally felt well enough to play the Wii game here on the floor. That was one of the fun things she was looking forward to as we made plans for her transplant. With that activity checked off her wish list, we can now go home! (smile!) We expect that she will be discharged tomorrow morning. Yeah!!

Special happy birthday wishes to my husband Tom and my dad!

Pictures for Your Pleasure

2009-09-20T23:14:00.011-04:00

After a rough start this morning, Esther turned a corner and started feeling better later in the afternoon. Zofran is helping to keep her nausea under control and she has actually eaten some food that hasn’t revisited her. She got a second dose of an IV immunosuppressant and (hopefully) her last dose of IV prednisone. She may have to continue on a small dose of oral prednisone until her levels of Prograf are where they want them to be. She reacted again to the steroids today, but it wasn't as intense or as long as yesterday. She walked the “big lap” around the pediatric floor twice. This morning they cut her IV fluids back to 50 ml per hour, but she still has neither desire nor tolerance for drinking. That will have to be tomorrow's big objective.

Katherine reports that today was also a turning point for her. She came for a visit just in the window of time when Esther was feeling the best ever!

Katherine and Esther are both looking great!

Two second cousins - Nicole and Esther

Katherine and company...
Front row, left to right: These are the folks who came to support and care for Katherine - Ashley Copeland (her sister-in-law), Nancy Copeland Kelley (her sister), the star herself, Nicole (her 5-year old daughter), Ben Kelley (her brother-in-law).
Back row, left to right: These are just two of the folks who are so incredible blessed by Katherine's gift - Tom and Nancy

One more picture for tonight....not for the faint of heart. Esther's outermost layer of skin is actually glued together.

Saturday Update

2009-09-19T23:52:00.004-04:00

I'm sorry I didn't post on Friday night. I had strict instructions from my husband to go to bed early!

We are now happily settled on Baird 5 (the pediatric floor). Esther was moved up from the ICU yesterday afternoon, enabling us to accomplish our two big Friday goals of more walking and getting to Baird 5!

Today's improvements include no more peripheral IVs, no more sequential compression device (otherwise known as the dreaded leg squeezers), and no more foley catheter! Yeehaw!! Esther has had no pain medication of any type since Friday afternoon and is still able to move around quite comfortably. (Steriods are good!)

Today's dose of steriods was another step down in their tapered dose plan so, thankfully, Esther had a much, much less intense sensory overload episode than she'd had on Wednesday, Thursday, and Friday. (Steriods are bad!)

Esther had a bit of a set back today with nausea and dizziness, which kept her from doing much walking. Now that the foley catheter is gone, Esther is required to get up every two hours to empty her bladder. That means she is moving around regularly, but the dizziness kept her from being able to walk the hall like we've done the last two days. While she won't get any points for distance today, she certainly should get points for speed! Her morning trips to the bathroom were slow and required me holding her up when she got too dizzy. By the afternoon, she changed her strategy and practically ran to the bathroom in order to get there before the dizziness overwhelmed her. Then she'd sit on the pot with the throw up bucket in her lap (ocassionally needing to use it). Then it was a mad dash back to the bed. As the IV pole driver, I had to be on my toes in order to keep up with her.

Eating is still not high on Esther's wish list, but she managed to get in a few bites. Unfortunately, everything she ate was eventually thrown up during the dizzy trips to the bathroom.

The surgical residents were called in this evening to assess the nausea/dizziness situation and their conclusion is that, despite receiving 50 ml of IV fluids each hour, Esther is too dry. They just gave her a 500 ml bolus. Esther still has a central line in her chest which makes it easy to get things in (fluids, meds) and out (blood for labs). The nurse just came in and increased her hourly rate to 100 ml, so we're likely to be up going to the bathroom throughout the night. Rats!

Esther's red blood cell count is very low and could possibly be a contributor to the dizziness, but they would prefer not to transfuse her. Since her RBC is slowly moving upward, they are hoping we can just wait it out.

We've seen a little more of the pre-hospital Esther today, including some nice smiles and some teasing with Dad.

A Very Happy Kidney and a Peaceful Night

2009-09-18T06:54:00.003-04:00

Six o'clock labs this morning show Esther's creatinine to now be 0.88!! That is fantastic! The rest of her body has some catching up to do before it is functioning as well as her new kidney, but I have no doubts that she'll get there!

I had a sweet time with Esther early this morning at 3:30. She woke up from a good long sleep and was much calmer. The intensity level had been turned down considerably. She still had a very strong urge to ripe off all her wires and tubes and to walk out the door for home, but she was able to express it less frantically. She was talking with her eyes open, unlike most of yesterday, and she just looked so much better.

We had some lovely harp music playing and there was a peace and deep quietness about the room as we prayed together. I was able to make her more comfortable by massaging her dry, itchy arms and hands with some nicely scented lotion. She was back asleep by 4:30 a.m. and is still sleeping peacefully.

Our big goals for today will be to do some more walking and to get moved up to Baird 5.

A Happy Kidney and an Unhappy Girl

2009-09-17T23:04:00.004-04:00

This was a hard day for Esther. The first day post-operatively has a reputation of being a tough one and that sure proved to be true for Esther today. In contrast to her physical limitations from the surgery, Esther's nervous system seems to have gone into overdrive. About an hour after receiving a big bolus of steriods this morning, Esther went into a state of sensory overload. The tangle of tubes and wires were making her feel trapped and restrained. Every little thing seemed to frustrate and overwhelm her. She complained of being claustrophobic and had periods of extreme agitation. It was sometimes difficult to reason with her. By this evening she was beginning to settle down a bit. She has said several times tonight, "Something is happening to my body and I don't know what it is!" That's a scary place to be.

At the moment, she is sleeping and seems comfortable. We're praying for a quiet night of restorative sleep.

In keeping with the competitive nature of the Copeland family, Esther wins the prize for being the first one out of bed and up walking (against her will!). Katherine gets the prize for walking the furthest! She came down from the 6th floor to the ICU waiting room where I got to visit with her briefly. Katherine looked as lovely as ever and was still smiling...clearly sore and uncomfortable, but still smiling! Esther was having a rare moment of peaceful sleep and Katherine didn't have enough reserves to get all the way down to Esther's room so, unfortunately, the two weren't able to connect today. I went upstairs this evening to introduce some friends to Katherine and discovered that she had been discharged! You go, girl!

Katherine's ex-kidney seems very at home inside Esther. It is working beautifully! Esther is peeing like a horse and her creatinine was already down from 6.0 pre-operatively to 2.5 this morning (.7-1.5 is considered normal). We are all expecting that her creatinine will be even lower tomorrow morning. How exciting!

Well, I have fallen asleep about four times while typing this and should take advantage of Esther being asleep to get some rest myself. Thank you for your prayers! We still have some hurdles ahead, but God is faithful. Praise God for Katherine's short hospital stay!

The Wait is Over!

2009-09-16T19:00:00.006-04:00

Great news! Katherine and Esther are both out of surgery and settled into their rooms. Katherine went up to the surgical floor at about 4:00 after recovering in post-op for a couple of hours. Esther went directly from the OR to the ICU at 4:30. Praise the Lord, everything went very well with both surgeries!

Two quick pictures before I run! Esther just woke up and is putting me to work! :)

Esther and Katherine early this morning just before showtime.

Katherine's kidney now becomes Esther's. Think about it.

You are an amazing person, Katherine!

The Long Wait

2009-09-16T13:14:00.004-04:00

Last report at noon was that Katherine is doing well and will soon be out of O.R. #4. An hour and a half has since passed and Darren (Katherine's husband) hasn't yet been paged to go and see her. Our family calls it "hospital time". "Soon" means different things in different places.

Esther was asleep in O.R. #3 when I left her side at 11:00 a.m.

We all enjoyed Esther this morning as the effects of her pain medication made her quite disinhibited. She was talking non-stop and seemed to say anything and everything that crossed her mind. It was quite entertaining! We'll have some good stories to tell her when she is no longer under the influence. It was great to laugh and break the tension of waiting to go down to the O.R.

Cleared For Take Off!

2009-09-15T23:25:00.003-04:00

Esther and Katherine are ready and cleared for the transplant tomorrow! There was a potential complication that arose on Friday, so we haven't been 100% sure that the transplant would actually take place until we got word this evening.

The story is too long and I am too tired to try to explain all the details. Suffice to say, Katie had some baby bunnies die suddenly and unexpectedly. The surgeon learned of this at Esther's pre-op appointment on Friday and was overly concerned (in our opinion) that the deaths could be caused by a disease that might be passed to humans. He immediately put Esther on antibiotics and threatened to cancel Wednesday's transplant if he didn't have answers by Tuesday (today). We spent the rest of the day last Friday researching and talking on the phone with our local vet, two state vets, a doctor at the Department of Health, and folks at the state water testing lab. We spent hundreds of dollars to have one of the bunnies necropsied and tissue samples FedEx'ed to a lab in New Jersey. Feed samples went out for testing. The situation escalated into a huge stress for us as we scrambled to get the answers that the surgeon required.

Reports from the N.J. lab today showed no evidence of any disease. Mycotoxins in the feed are the likely culprit, but difficult to prove. Katie found evidence of the feed being contaminated with corn and corn is a problem for rabbits.

The surgeon is satisfied that there is no threat to Esther (or Katie and Samuel who are immune suppressed) and we are proceeding with the transplant. Whew!!

After last night's pain ordeal, we got some other folks involved in Esther's care. They changed her pain medication and it has made a world of difference! Praise God! Fletcher Allen is a teaching hospital and sometimes those learning are doing just that - learning. There has reportedly been some follow-up between attendings and residents because of the poor care that Esther received.

Leaving that behind, we're looking ahead to tomorrow with mixed emotions. Katherine starts things off by arriving at the hospital at 6:00 a.m. She'll be the first into the O.R. at about 7:30. Esther is expected to follow around 10:00 a.m. I'll try to post an update during the day.

We covet your prayers!

New Day

2009-09-15T06:16:00.003-04:00

It was a rough night here at the hospital, but the sky is beginning to brighten and a new day is just around the corner.

Esther and I will be heading down to dialysis in a few minutes. We are both exhausted.

If you'd like to send an encouraging note to Esther while she is here at the hospital, please click on the link below and follow the directions. Esther's room number is Baird 523. That will change tomorrow, but the volunteers who hand deliver the emails will be sure to find her.

http://www.fletcherallen.org/patients_visitors/visitors_guide/send_a_gift/

Rough Spot

2009-09-14T23:02:00.004-04:00

If you have never had a child experience a "10" on the pain scale, get down on your knees and thank God! This evening we watched helplessly as Esther suffered through almost three hours of the most excruciating pain that she has ever experienced. I cannot describe the anguish we felt as we held her and tried to comfort her. To have a child begging you to make the pain go away and be unable to do it, is one of the worst things I have experienced as a parent. I'm afraid that Esther thought she was going to die. She gave us careful instructions that we were to donate as many of her organs as possible. I cannot type this without crying. In this age of modern medicine, it was unconscionable that they allowed her to suffer so terribly for so long.

Despite the incredible pain, Esther has been SO sweet. She just wanted to be sandwiched between her two parents and so we all squeezed into the bed. She couldn't get close enough to us. She whispered over and over again, "I love you, I love you". She was grateful for every small gesture that we made to ease her pain, thanking us each time. One of the challenges from the sermon this past Sunday was to consider what comes out of us when we are squeezed by hardship and difficulty. Tonight we saw the love and sweetness that is inside Esther. I wonder, if she had been angry and nasty through those hours of pain, would it have been easier for the rest of us to endure? As it was, it was heartwrenching.

After many, many requests and ultimately demanding that something be done, Esther was finally sufficiently medicated. She is now sleeping. Tom just crawled out from under her arms and has headed home for the night. I am just watching her sleep and trying to find peace.

At this moment, I am especially grateful for the wisdom of my dear friend, Kit, who insisted that I cancel the three Latin classes that I would otherwise be teaching tomorrow morning. Besides the likelihood of me being a basketcase tomorrow, this is where I need to be. Kit, thank you for mothering me!

There are both new and familiar faces here on Baird 5. One set of faces that is missing is the Perri family. Their Ross and our Samuel spent a lot of time together here and in the ICU over the last two years. Ross was buried on Friday. I know that watching a child suffer is nothing compared to losing a child. Tony and Tammy, we grieve with you and for you. I pray that you will find peace and comfort in the arms of Christ and your loved ones.

Surgery Complete!

2009-09-14T12:13:00.002-04:00

All is well!! Tom and I are now sitting in the PACU with Esther. She is drifting in and out of consciousness with an emesis basin under her chin. They are working to keep her comfortable.

Praise the Lord, the surgery went without complication! Esther ending up losing three organs for the price of two. In addition to her kidneys, they decided to also remove Esther's appendix when they found that it was a bit plugged up. Apparently, the chances of having appendicitis are much higher when one has a blocked appendix, so they removed it as a precaution. They tell us it would be a more complicated procedure to remove an appendix with a transplanted kidney in place.

We will hang out here for a couple hours until she is more comfortable and a little more alert. Then it is on to Baird 5 and all the familiar faces up there.

Surgery in Progress

2009-09-14T10:14:00.004-04:00

With the hospital's new wireless internet, I will have easier access to the internet. So here I am, reporting live from the scene. We just had a bit of a scare when the hospital pager went off. We've been through this enough times to know that the timing was odd. Usually, a page at this point in a surgery means bad news. Thankfully, it was just one of the surgeons returning my camera to me and reporting that one kidney was out and that everything was going well.

So, thanks to technology and a surgeon who doubles as a photographer.... here is a picture of Esther's recently deceased left kidney! May it rest in peace! One more still to come out.

Exciting News!

2009-09-13T23:28:00.004-04:00

Well, it is time to fire up the blog once again! I'm hopeful that this round of updates will all be good news. So, let's start with a super duper awesome announcement....

Esther is having a kidney transplant on Wednesday, September 16th! Her wonderful, kind, generous, lovely, talented, funny donor is Katherine Blume! She is Tom's cousin and has come all the way from California for the big event. She brought along her 5-year old daughter, Nicole. We have all enjoyed reconnecting with Katherine and look forward to doing the same with other long lost family members who will be arriving throughout the week to support Katherine. The second cousins (Nicole and my children) have been having a great time together swimming in the hotel pool and doing some sightseeing.

Before Katherine and Esther's big day on Wednesday, Esther has to have a double nephrectomy on Monday (tomorrow!) to remove both of her native kidneys. On Tuesday, Esther will have dialysis, and on Wednesday, the surgeons will reopen the same incision to do the transplant. Two surgeries in three days is a lot, but this routine was used successfully when Katie had her transplant, so they are going to try it again on Esther.

There is so much more I could say...so much has happened in the last few months...but it is getting late and we have to be at the hospital tomorrow at 6 a.m. Please keep both Katherine and Esther in your prayers this week. It will be a hard week for both of them.

Here's a picture of Katherine and Esther after a tour at the Ben and Jerry's factory in Waterbury.

Katherine, you are a hero in every sense of the word! I struggle to find words adequate to express my deep gratitude for your gift. Please know that we recognize the incredible sacrifice that you are making on Esther's behalf and we are so, so grateful! A thousand thank you's!!

Still Waiting

2009-08-26T23:10:00.004-04:00

As of today, Samuel has accumulated 600 days on the waiting list. There have been no offers of a kidney from the organ bank. It seems Samuel has developed a significant number of antibodies which makes him incompatible with a large percentage of the population. We have recently had three wonderful people step forward to donate. Sadly, because of these antibodies that Samuel has developed, he can't receive a kidney from any of the three. The transplant team is beginning to explore other options.

A Party and a Procedure ...or... A Festivity and a Fistulogram

2009-07-07T23:55:00.011-04:00

Wednesday will be a particularly busy day at the hospital for us. Samuel will be "celebrating" his 300th dialysis treatment. He spent all afternoon baking cookies (all by himself!) to bring for tomorrow's party. It will be a time to recognize and thank the team of dialysis nurses who has taken such good care of Samuel for these past 27 months.

A couple months ago as we were driving to dialysis, Samuel said to me, "Some days I wish that I didn't have kidney disease [long thoughtful pause], but then I think about all the nice people that I would never have met." Samuel proceeded to list many of the doctors, nurses, and hospital staff whom he has come to know and enjoy.

After all the terrible and difficult things that Samuel has been through these last 2 years...after all the pain that he has endured...after all the disappointments...after all the days, weeks, and months that he has spent in the hospital...for him to have that as his focus is pretty incredible! I am so thankful for the young man that the Lord is shaping and the amazing attitude that He has given Samuel.

Today is Samuel's 550th day on the waiting list. We are still waiting, but not so patiently. Every time the phone rings, I wonder if it is "the call". Most mornings, Samuel optimistically announces, "Today I am getting my transplant!" One of these days he will be right!

Wednesday will also be a busy day for Esther. As you may know, she started dialysis back on June 24th. It was not a very auspicious beginning. After two dialysis sessions of multiple needle sticks trying to get her hooked up and her fistula working properly, Esther had had a total of 50 minutes of dialysis and was black and blue from her wrist to her elbow. They started talking about putting in an ash split catheter (like Samuel had for so long). As far as I was concerned, things were moving too quickly and in the wrong direction!

I petitioned for a time out and we shipped Esther off to the Jersey shore with some dear friends for a week of R and R. She came back home this past weekend and we are ready to try again. The consensus is now that she has a narrowing (called a stenosis) in her fistula that is causing all the trouble. Tomorrow, while Samuel is partying, Esther will be having a surgical procedure called a fistulogram. I'm guessing they will use angioplasty to try to expand the stenosis and make the fistula useable. If they are successful, a groggy Esther will be wheeled directly up to Shep 4 for dialysis. If they are not successful, I fear we will have to resort to the dreaded catheter. Based on Esther's labs from Monday, we no longer have the luxury of postponing treatment.

I'd be grateful for your prayers tomorrow. As I've probably shared before, one of my least favorite things in all the world is having multiple family members in the hospital at the same time. I can manage okay when everyone is in the same place, but when they start getting spread around the hospital, I have a harder time being calm and serene. On the bright side, I'll likely get my exercise tomorrow running back and forth between the 1st floor and the 4th floor. I sure don't want to miss the party!

Lydia and Esther on Long Beach Island in New Jersey. Thank you, Brian, Katherine, Faith, and Lark! What a gift!

Esther to Begin Dialysis Routine on Wednesday

2009-06-23T23:29:00.008-04:00

Well, we’ve known it was coming, but I am still sorry to say that Esther has reached the point of requiring dialysis. She starts tomorrow.

We have been hoping that Esther would be able to have a pre-emptive transplant and skip dialysis altogether, but it seems the Lord has other plans for her.

Esther will join Samuel in the 3-day-a-week dialysis routine. She's disappointed, but is taking it all in stride. She is amazingly matter-of-fact about the whole thing. As of today, she has accrued 74 days of waiting time on the organ bank list. There is no telling how long it might take to get a kidney through the organ bank, but we are hoping and praying for something to come through this summer.

Samuel, on the other hand, has 536 days of waiting time accrued. That's a lot of time for a pediatric patient! He was activated on the waiting list in May and could get "the call" at any moment. Everyone, including the transplant team, is surprised that a kidney hasn't yet become available for him.

We can only wait and trust in the Lord and His perfect timing for Samuel's and Esther's transplants.

It has been a long time since I last posted. If I get a chance, I will try to fill you in on some of the highlights of the last five months. In the meantime, I would be grateful for your prayers for Esther as she begins a new phase of her personal kidney adventure.

Esther and her horse, Candy, enjoy some quiet time together.

Medication Woes

2009-01-25T14:53:00.003-05:00

Katie is having a terrible time with her medications. It has been a challenge for the docs to find a combination and dosage that keeps her protected from rejection without lowering her white blood count too much or torturing her with side effects. If you remember, she was hospitalized last summer for a couple days because her white count was dangerously low. Her transplant was 9 months ago and she is still having blood drawn once or twice (and sometimes even three times) a week to monitor medication and WBC levels.

A couple months ago, Katie began transitioning from one immunosuppressant drug (Prograf) to another (Rapamune) because she was having some unbearable side effects from the Prograf. A couple weeks ago, the docs inadvertently overdosed her on the new medication and she has been a physical and emotional wreck ever since. Not fun!! If things don’t level out soon, we are thinking about sending Katie to live with Dr. D. That should motivate him to adjust her meds to a level that she (and those around her) can live with! (Smile!) Seriously, Katie is really struggling and would be grateful for your prayers. After a 4.0 GPA last semester, she is having a hard time keeping up with her studies.

Because each person metabolizes drugs differently, finding the perfect combination and dosage of drugs is an art, not a science. Katie clearly metabolizes things differently than the norm. Lab work shows that she is momentarily at the “right” drug level, yet her white blood count is too low and she is overwhelmed with emotional and physical side effects. The risk of backing off on meds enough that Katie is not experiencing side effects is that she may then be susceptible to rejection.

So while you are praying for Katie, please also pray for the docs that they might have wisdom to manage Katie’s meds in a way that keeps the whole person of Katie well, not just her kidney.

Surgery Went Well!

2009-01-05T23:16:00.003-05:00

Today Samuel did a great job of NOT living up to his title of "prince of complications" (as he has been dubbed by a friend). Everything went well!

His fistula is on the inside of his right elbow (he is left-handed) instead of down on his wrist like Esther's. Instead of one incision (as Esther has), Samuel has two. The vein and artery are much farther apart higher up on the arm, so to make the connection requires two openings of the skin.

Samuel has had so many IV's in the past that he has sections of his veins that are damaged from scarring. They needed to place the fistula higher up his arm in order to find a good spot. The vascular surgeon still had to do some work to expand a scarred area in the vein. We'll just have to wait and see how the fistula develops. It is not uncommon that a fistula needs a second procedure at some point to make things work just the way they should.

My Mister-been-there-done-that was as calm as a cucumber (and full of it!) in pre-op. Here he is doing Algebra while waiting to go to the OR.

Samuel, are you actually smiling AND doing Algebra at the same time? How is that possible?? -VBG!-

Thanks to everyone who was praying for Samuel today!

Fistula Surgery for Samuel

2009-01-04T23:17:00.005-05:00

Kindly keep Samuel in your prayers tomorrow as he has his fistula surgery. He is scheduled in the OR at 2:30. It is a relatively minor procedure, but Samuel has a history of making things more complicated!

Happy New Years!

2008-12-31T11:29:00.004-05:00

Seems like it was just Christmas and now it is New Year's Eve already!

We are almost 3 weeks out from the hernia repair and Samuel has turned a corner in his recovery. His appetite is back and he is not falling asleep on the couch as often. The incision is healing well and the Dermabond (tissue adhesive) that was used to glue the outer layer of skin together is beginning to flake off. The last 2 sets of blood cultures drawn just before Christmas never grew anything (PTL!), so the 1000 mg of Vancomycin that he has been getting intravenously with each dialysis session has effectively done its job. All in all, things are settling down nicely and we are excited to be celebrating the new year at home with some dear friends.

On a sad note, today is the funeral for my cousin's wife Hope Severance. She died on December 28th from cancer. She will be greatly missed! Please continue to pray for her family.

Merry Christmas to All!

2008-12-24T22:11:00.002-05:00

It looks like we've got our Christmas miracle! Samuel's cultures that were drawn on Monday have not yet grown anything!! That means he didn't have to have his catheter pulled today after dialysis. What a relief! Thank you, Lord!

This Christmas is even more special for us as we remember how difficult it was to have Samuel in the ICU at this time last year. We are grateful that we can all be together this year.

While we are thankful for so many blessings, our hearts are also heavy for my cousin's family. His wife, Hope, is in the hospital with cancer and is not expected to live much longer. They have three children ages 19, 11, and 9. Please pray for Eric, Justin, Emelie, and Nathan. It is a heartbreaking situation.

We would like to wish each of you a most blessed Christmas. May you be surrounded by those you love, may you remember the reason for the season, and may the joy of His coming touch your life and bring peace to your heart.

With love,
Tom, Nancy, Katie, Hannah, Grace, Samuel, Esther, and Lydia

Line Infection Update

2008-12-22T23:01:00.003-05:00

Samuel had blood cultures drawn for the third time today. At the moment, it appears that the bacteria may only be in the arterial line of his catheter. If anything grows in the next 48 hours from the cultures drawn today, Samuel's catheter will be pulled on Wednesday after dialysis. If nothing grows, the catheter will stay. Either way, antibiotic treatment will continue for one month.

We were planning to activate Samuel on the organ donor list over the month-long Christmas break in hopes that a kidney might become available for him. Unfortunately, the fact that he has this infection means that this plan is no longer an option. He will remain on the donor list as "unavailable" and continue to accrue time.

In the meantime, Samuel has made the difficult decision to get a fistula. Up until now, he has been violently opposed to any such suggestion. Thankfully, his reason and logic have overcome his aversion. The surgery is scheduled for January 5th. Again, it will take several weeks before the new fistula could be used, but once it is up and running and the dialysis catheter is removed, the chance of an infection interfering with a future transplant will decrease significantly.

Happy Birthday, Esther!!

2008-12-19T22:22:00.005-05:00

Today is Esther's 13th birthday! How thankful we are to have her as part of our family! We love you, Esther!

Here is my sweet, brave girl on Monday when she was waiting to go to the operating room.

And here she is on Tuesday with her favorite younger sister, Lydia.

Esther's wrist is still quite sore, but it seems to be healing well. She is under doctor's orders to baby her left arm for a few weeks and so has been excused from loading the woodbox, carrying heavy loads, and other such activities that might put a strain on her arm and endanger the development of the fistula.

Regarding Samuel's recovery....we are, as usual, having to deal with complications. It seems he has a blood infection. His ever-attentive doctor ordered blood cultures on Thursday after Samuel's temperature was a bit elevated. We got a call this morning saying that one of the three cultures was growing a Gram-positive bacteria. We relunctantly abandoned our birthday plans for Esther and headed up to the hospital where Samuel received a whopping dose of two different antibiotics through his catheter.

The blood cultures (and antibiotics) will be repeated again tomorrow in dialysis. A course of action will be determined once we have a little more information. It is very important to get rid of the infection before it has an opportunity to settle anywhere else in Samuel's body. Our prayer is that the infection is localized in only one of the catheter's two lumens and that the antibiotics will be able to clear it out. Unfortunately, grim reality and past experience leave us with little hope that the catheter can be salvaged.

The bad thing about removing a catheter is the discomfort and inconvenience of having another one put in. With Christmas on Thurday, the requirement of negative blood cultures before a new catheter can be placed, and a limitation on how long Samuel can go without dialysis, the timing of putting in a new catheter will be tricky.

My coping mechanism of trying to find something good in every situtation leads me to be thankful that we now have a likely explanation for Samuel's slow recovery. His surgery was a week ago today and I can finally say that he has actually eaten something more than half a slice of toast.

Esther has so graciously and selflessly given up her birthday plans today as I dealt with Samuel's issues. I feel badly for her, but am also very proud of her mature response! By this evening, we were in the midst of a blustery snowstorm so ended up cancelling our plans for a birthday dinner out at a restaurant. Instead, we have nestled in and are having a Pride and Prejudice movie marathon - all 5 hours of the A&E production. It is one of Esther's favorite movies.

Tuesday's Patient Report

2008-12-16T21:48:00.006-05:00

Esther's surgery yesterday was a piece of cake. She did great! The artery that the vein was connected to is unusually small so the vascular surgeon is not sure if it will be able to do the job. We'll just have to wait and see.

Meanwhile, Samuel is having a slow recovery. He is moving very slowly, battling nausea, and hasn't eaten anything since Saturday. He is hurting, but is choosing not to take as much pain medication as he could. The car ride and the time at the hospital for dialysis took a lot out of him today.

Please keep praying!

All is well!

2008-12-14T18:57:00.003-05:00

Samuel is home and doing well! He is moving slowly and begging us not to make him laugh. What a relief to have him back!

Let the healing begin!

Photos from Thursday and Friday

2008-12-13T23:36:00.006-05:00

Now that I'm back at home with a faster internet connection, I thought I would post a couple photos....

This is the group of young men who visited with Samuel in dialysis on Thursday. They had a great time playing Risk. Thanks for coming, guys!

This second photo was taken the next morning while we were in pre-op with Samuel. He is sporting a nifty thermal hat designed to keep one's head warm in the cold operating room. He put it on and was being goofy.

We had had some snow and ice overnight and things at the hospital were running late as a result. Tom, Samuel, and I played Skip-Bo to pass the time. Samuel was happy and relaxed during the 3-hour wait. When it finally came time to go to the OR, I suited up in a special outfit and walked alongside as they wheeled him down. He had picked up an issue of Reader's Digest in the waiting room and was reading me jokes from it as we went down the hall. When we got into the operating room, he had me read jokes to him for a few minutes while they got him arranged on the table. They started administering the propofol to put him to sleep and at the last second before he was out, he said cheerily, "Bye, Mom!"

Three hours later in the recovery room, I sat with a very different young man, who was focusing all his energy into staying relaxed in the midst of great pain.

Let's all remember the happy, smiling Samuel and pray that he is with us again soon.

Surgery Report

2008-12-13T22:05:00.002-05:00

As usual, things didn’t quite go as expected. A small incision to repair one hernia turned into a 6 or 7 inch incision to repair multiple hernias all along Samuel’s old midline incision. This is now the third time in the last 12 months that his abdomen has been cut open in the same place. The surgeon used a 7 x 15 cm piece of mesh to bridge the gaps in Samuel’s fascia. This polypropylene monofilament mesh material, called Atrium C-QUR Mesh, will provide the reinforcement needed to keep his insides where they belong. The mesh has a coating of bioabsorbable fish oil to promote healing. At my request, Dr. DiCarlo kindly saved us a scrap so that we could see what is now inside of Samuel. A drain was also placed in Samuel’s abdomen to keep fluid from collecting under the skin.

A bigger incision means more pain and a longer recovery time. Instead of coming home today as originally planned, Samuel will be staying in the hospital a little longer – hopefully only one more night. Pain management was a challenge this morning, but by this afternoon he was much more comfortable even though he was taken off the narcotic IV pain meds. He ate well this afternoon and was able to get up and walk around a few times.

This evening is a different story. He is very nauseous and not able to eat. Sleeping and throwing up have been his only activities since about 5:00 this evening.

I’m heading home now and leaving Tom to manage things here with Samuel. Hopefully, it will be a quiet night for both of them.

Samuel to Have Surgery Tomorrow

2008-12-11T07:47:00.007-05:00

Okay, since we had our fun on the blog yesterday, we can now get back to the unpleasant stuff.....

Samuel is having hernia repair surgery tomorrow. He has an orange-sized hernia just above his belly button were things didn’t heal properly along his midline incision. The problem is attributed to having had that midline incision cut open two times last winter, having been malnourished in the months following the second surgery, and having been on a certain immune-suppressant drug which inhibits healing.

We are expecting (and praying) that it will be an uneventful surgery with a short one-night stay in the hospital. If everything goes as it should, Samuel will have the surgery on Friday morning, spend the night on the pediatric floor, dialyze on Saturday as usual, and then come home. Tom will be spending the night with Samuel for some quality male bonding time.

Please pray for Dr. DiCarlo, the transplant surgeon, who will be doing the repair work. The poor man has had too many bad experiences while operating on Samuel. For both their sakes, we’d like things to go well this time around. We are not afraid to place Samuel in Dr. DiCarlo’s capable hands.

The next item for prayer is Esther. At her appointment with the pediatric nephrologist in November, Esther’s creatinine was 3.50. That translates into a kidney function of 24%. That is down from 28% the month before.

Esther is having her fistula surgery this coming Monday, the 15th. It is a 1 ½ to 2 hour procedure performed by a vascular surgeon. She’ll be in and out the same day. It usually takes about 3 months before a fistula is ready to be used for dialysis. We are still hopeful that a transplant can be arranged before Esther needs to begin dialysis. We will all be very thankful if she never has to use her new fistula!

Well, we’re off to a museum this morning with some homeschooling friends. It is right next door to the hospital, so Samuel and I will walk over when it is time for his dialysis. Esther and Lydia will stay to make Egyptian jewelry with the group. A friend or two (boys who aren’t into Egyptian jewelry) may join Samuel in dialysis for some fun and games. It sure does help the time pass quickly when we have visitors!

Smith Family on Stage

2008-12-10T17:51:00.006-05:00

I promised myself a while ago that I would post something fun before I shared any more discouraging kidney news. It is my new strategy to make the blog less odious to me in hopes that I won’t avoid it as I am now wont to do.

So here is the best I could do at the moment. It is a video clip from our homeschooling program that meets on Mondays. Each week, one family presents something during the opening program. Our turn was back on November 3rd. You’ll be able to see how well Samuel is doing. At the time of our presentation, we had only been playing the tin whistle for 3 weeks. That is my excuse for choking! :)

After you’ve had a chance to savor the Smiths doing some normal, fun stuff, I’ll come back and post the discouraging news that you’re used to reading here. But beware, you may have to get used to reading more boring normal stuff because good things are ahead for us. I’m sure of it!!

One Year Anniversary

2008-10-31T23:53:00.005-04:00

Today marks one year since Samuel had his kidney transplant. Someday I should probably explain in more detail what took place, but really I would prefer to forget the whole thing. When it is all said and done, I just have to thank God that He spared Samuel’s life twice that day.

I have received many requests to keep the blog going and I will try to do that. I have to confess that it is hard for me to come back to the blog….so many bad memories.

To bring you quickly up-to-date…

Katie is doing well. She’s busy with school and running her grandmother’s book business. She struggles with some side effects from the medications that she has to take and has had some trouble with her potassium being too high and her white blood cell count being too low. She has been hospitalized for both issues over the last couple months. We continue to be grateful for Kelly's gift to Katie!

Samuel is still going to the hospital 3 days a week for dialysis. He recently had a blood infection and his dialysis catheter had to be removed. He was tubeless over the weekend and a new catheter was put in on Monday this week. They will continue to treat him with IV antibiotics for a month.

Overall, Samuel is doing very well. Dialysis is hard on him and he still has some physical challenges, but most days he is a happy, funny guy. He is enjoying his studies and is especially grateful to be able to participate in the homeschooling program that we do on Mondays. Samuel's new kidney (Tom’s old one) is not functioning and he needs another transplant. We are hoping it might happen shortly after the school year ends, but we still need to find a donor.

Esther is moving into a new stage in her personal kidney adventure. She has gone from 50% kidney function when first diagnosed in April 2007 to about 40% function in April 2008 to 28% function now in October 2008. She recently began preparing for her future transplant by having lots of blood drawn for tissue typing. The information from these tests will help the transplant team determine the right match for Esther when the time comes.

Esther is scheduled to have vein mapping done in a couple weeks in preparation for a surgical procedure which will create a fistula in her arm allowing vascular access for dialysis. Here is a brief explanation of what a fistula is: http://tinyurl.com/6b97ws.

Samuel has been (and continues to be) adamantly opposed to having a fistula. That is why he has the catheter in his chest and has to deal with the risks of infection. Unlike many doctors who would insist on a fistula, Dr. Guillot has graciously allowed Samuel to continue with a catheter. We are still hoping that Samuel might change his mind.

It can take about 3 months for a fistula to mature enough to be used for dialysis. Esther needs to have the procedure done in the near future so that it will be useable when she needs it. No one knows for sure exactly when Esther will need dialysis, but it seems to be coming up sooner than we'd all like. Typically, when a patient reaches 20% kidney function, they are in need of dialysis or a transplant. Our hope has always been for Esther to have a pre-emptive transplant, meaning she would skip dialysis altogether, but she may need to be on dialysis until a donor can be arranged.

Tom is doing very well with his one remaining kidney. He hasn't experienced any difference in his energy level, health, or life in general since his donation one year ago today.

Which leads me to this request.....

If you would consider donating a kidney to Samuel or Esther, please contact me at smiths@smithfamilyfarmvt.com and I will connect you with a transplant coordinator who can answer your questions. We would be forever grateful.

~ Nancy

Another Long Day at the Hospital

2008-06-13T22:15:00.004-04:00

Yesterday morning at work, Tom very suddenly came down with a fever and severe headache. Twenty-four hours later, he had not improved. So....this morning I brought Samuel to dialysis and Tom to the ER.

After lots of waiting, a chest x-ray, and a urine sample to rule out other things, the docs agreed that Tom should be tested for meningitis, just in case. Unfortunately, it took 4 lumbar punctures to finally succeed at getting some spinal fluid to test. Ouch! Praise the Lord, Tom does NOT have meningitis! He received 4 liters of IV fluid to get rehydrated (we need to keep that one remaining kidney happy!).

I sure did get my exercise today going back and forth between the ER on the 1st floor and dialysis on the 4th floor. I especially dislike having more than one family member in the hospital at the same time!

After dialysis, Samuel got a ride home with his grandparents who happened to be in town. His grandmother had been in the hospital since Tuesday night for routine monitoring while they adjusted her heart medications. She was discharged today, just in time to help with our crazy day.

Tom and I eventually made it home at 7:30 this evening! Tom still has a high fever and is quite sick, but now we can just wait it out without worrying. I’d be grateful for your prayers that Tom would be able to keep his germs to himself! None of us would enjoy being sick, but it could be particularly dangerous for Samuel and Katie.

All is well!

2008-06-07T22:39:00.003-04:00

Sorry to leave you hanging! All is well! Samuel came home from the hospital on Wednesday and is doing great! I will try to catch you up on the details when I have a chance. Life is galloping along and I am hanging on for the ride!

Friday Report

2008-05-23T23:17:00.004-04:00

Samuel is still in the hospital, but making progress. He is having more awake hours and even some blocks of time when he is more like his old self. On Thursday he had a 3-hour "upper GI study with small bowel follow through" to rule out any physical causes of his lack of appetite. I think everything looks okay, but I haven't heard the final report. Samuel is seriously malnourished and it is affecting his body's ability to heal, grow, and feel well. His new "job" is to consume a minimum of 1500 calories each day. He has started taking some medication that is intended to stimulate his appetite. His incredibly caring doctor brought him 2 boxes of Pop-Tarts to tempt him with some high calorie food!

The docs continue to monitor the fluid collection via ultrasound and x-rays. The pocket of fluid is much smaller, but there is still more that needs to be drained. None of the cultures has grown any bacteria, so for lack of a better explanation, they believe it is lymphatic fluid and are calling it a "non-infectious intraabdominal fluid collection". At one point, the plan was to remove the drain on Friday, but it is still in there.

Samuel had a torturous time with restless legs last night. He finally fell asleep at 2:00 in the morning with the help of some drugs. I was awake until 3:00 waiting for lab results and keeping an eye on him. We were roused at 6 a.m. this morning to go down to dialysis. Ughh!

Our family is spread far and wide this weekend. Esther left yesterday with some dear friends to spend a few days at their beach house in southern New Jersey. Tom left early this morning with Katie, Grace, Lydia, and the camper for the Massachusetts Sheep and Wool Festival. Grace and her dog, Click, are competing in their first-ever sheep dog trial. Grace has a very special relationship with this dog and has done an amazing job of training him in both herding and agility. I'm sad to be missing this important event in her life. We had also made plans to meet up with Katie's donor, Kelly, at the festival. I'm sorry to be missing that as well! Faithful Hannah is home manning the fort and feeding the animals. Samuel and I had a nice visit with her here at the hospital this afternoon.

Well, the eyelids are very heavy so I'll sign off. Thanks for your continued prayers!

Wondering and Waiting

2008-05-20T22:22:00.004-04:00

On Monday morning, Samuel had a drainage tube placed through his back and into his right renal fossa. The long tube has a JP drain at the end of it which applies a gentle, constant suction to draw out the fluid collection. Before putting in the drain, the docs used a needle and syringe and were able to draw out 50 milliliters of a very thick pus-like substance. Studies done so far have not been able to identify it. They have set up cultures and are waiting to see if something will grow, but under the microscope, there were no signs of bacteria or white blood cells. This would seem to indicate that the fluid collection is not an infection. At the moment, we do not know what it is, where it is coming from, and why it continues to reaccumulate. Always too many unanswered questions! Until we know for sure, Samuel is receiving two intravenous antibiotics.

Samuel had dialysis first thing this morning and got a migraine-like headache early in the session. I have to say he looked awful. He spent most of the day sleeping. He was a little more interactive this evening, but still feels terrible and is not interested in food. Walking is very hard for him....too many things hurt. I'm not sure what the docs have planned for Samuel. For now we are just waiting.

Katie is beginning to feel a little better. The antibiotic that she started on Sunday seemed to make her sicker, so on Monday they switched to a different one. She is slowly improving.

More Bad News on Sunday

2008-05-19T00:00:00.006-04:00

Samuel continued to have a fever this morning (Sunday). He also had a new pain in his right abdomen/side. Our first thought was appendicitis! Dr. G. thought it would be a good idea to get him checked out so I brought Samuel and Katie into the emergency room. I was already planning to bring Katie to the hospital on Sunday morning after speaking with the doctor on Saturday night. We suspected that she had developed a bladder or kidney infection and the doc wanted her to be seen. The three of us went to the emergency room while Tom took everyone else to church.

The short version of the story is that Katie does have an infection. They will grow a culture to find out exactly what type. Meanwhile, she got a prescription for antibiotics and drove home. She is feeling pretty lousy, but should perk up in a day or two.

Samuel, on the other hand, spent a very long day in the emergency room. He eventually had a CT scan which showed that he has a pocket of infection in his right renal fossa....the same site where he had so much trouble last winter. The size of the infection is about 2" x 2" x 5". They are planning to place a drain through his back into this pocket in order to drain it. Samuel has, in the past, had two other drains in the same spot. Both previous drains were very painful for him. We are hoping that this time will be different.

After hanging out in the emergency room for 10 hours, Samuel was admitted and moved upstairs to the pediatric floor. Tom came for a visit and brought my computer, a toothbrush, and some clothes. Some of the Conchieris also came to cheer and to pray. Thanks, guys!

With the help of Benadryl and some pain medication, Samuel is now sleeping. The drain placement is scheduled for first thing Monday morning.

Samuel is VERY discouraged. We covet your prayers!

Good News and Bad News

2008-05-17T21:37:00.003-04:00

Four weeks have passed since I last posted. Katie continues to heal with great success. Her creatinine is absolutely normal!! She is making fantastic progress, even reducing some of her medications. She "graduated" this week from once-a-week clinic appointments to once-a-month visits. Katie will still have to have her blood drawn each week for monitoring, but won't need to see the docs unless there is a problem. She is already picking out classes for the fall semester and is excited about getting back into life! This is the miracle of organ donation! How grateful we are to Kelly!!

Unfortunately, the report for Samuel isn't so exciting. He really hasn't been well since he was discharged from the hospital in February. He has been battling Clostridium difficile (C. dif), an overgrowth of bad bacteria in his gut, and has been through several courses of antibiotics in an attempt to knock it out. He has also been plagued by debilitating back pain and nausea. He has just been one sick boy! His labs have gotten progressively worse as his kidney function has declined. We've known for a few weeks now that Samuel was headed back to dialysis, we just didn't know exactly when that would be.

Last week on Friday, Samuel had to take a special medication because his potassium was dangerously high. On Monday this week, with a creatinine of 4.62 and his potassium and phosphorus high, Dr. G. gave Samuel the option of starting dialysis that day or the next. He chose to wait a day. It was quite a disappointment for Samuel (and all of us!). He was pretty quiet and withdrawn most of the day, but by dinner he was back to laughing and enjoying his sisters.

On Tuesday, May 13th, Samuel went in to the hospital to have another catheter placed in his chest. He was the most relaxed and chatty in pre-op that I've ever seen him. He told me all about the latest book he was reading until his throat got so sore that he had to stop talking! The procedure of placing the ash split catheter took just under an hour. Samuel was in the recovery room only a short time before they rolled him up to dialysis still asleep. The dialysis nurses welcomed us with smiles and hugs. The same nurse who did Samuel's very first dialysis run back in March '07 was there to do his 120th session!

After three dialysis sessions this week, Samuel still isn't feeling much better. He is having a hard time getting comfortable with the new catheter. He continues to sleep a good part of each day and has no appetite. He is discouraged with the whole scene and is losing confidence in the medical team. He just wants to feel better! He had a bit of a fever when he went to bed tonight, so we'll have to wait and see what tomorrow brings.

I'm trying to psyche myself up for the ol' three-days-a-week-to-the-hospital routine. It is a hard schedule for everyone in the family. I would ask you to pray for us as we make the adjustments and especially for Samuel as he struggles physically and emotionally.

Thank you!

Katie is home!

2008-04-19T22:17:00.001-04:00

After two surgeries and only five nights in the hospital, Katie is home! She still has lots of healing to do, but is off to a great start! Praises be to God on high!

Katie has to go back to the hospital to have her blood drawn both on Sunday and again on Monday. Her creatinine level will be monitored very closely at first to watch for any signs of rejection.

I am also very happy to report that Kelly was discharged from the hospital yesterday. She is staying in town and resting up at the hotel until her follow-up appointment with the surgeons on Monday. We are looking forward to spending some time with her and her husband tomorrow.

Not much more to say at the moment. My brain is tangled up in excitement, relief, gratefulness, and exhaustion.

Just One Day After the Transplant....

2008-04-17T22:19:00.004-04:00

and Katie is cruisin'!! Amazingly, her stay in the ICU lasted less than 24 hours! She is now settled happily in Baird 686, at the other end of the hall from Kelly. The new kidney is working beautifully and making lots of great urine. Her creatinine is lower with every blood test. Katie has been up walking twice today and had a full meal at dinner. Wow, when a transplant works, it REALLY works! Please rejoice with us! I was able to say it when things were tough with Samuel and now I can say it when Katie is having such a speedy recovery....God is good!!

Many thanks to all of you who emailed Kelly today! I understand she got quite a pile. You guys are great! Thanks for giving Kelly a glimpse of the special family and friends that we have! Please continue to pray for Kelly's recovery. She is having a hard time.

Transplant Report

2008-04-16T22:53:00.002-04:00

Well, it was a long and exhausting day for all parties involved, but I'm so thankful to be able to report that both Katie and Kelly are tucked in for the night and resting. Katie is in the ICU and Kelly is up on the surgical floor. It was a very hard day for both of them. The Lord graciously granted us an uneventful and uncomplicated transplant. Let the healing begin!

I thought it would be great if we could do an email blitz for Kelly. I'll need your help. If you'd like to participate, please click on the link below. You'll need to type "Kelly Lamere, Baird 693" in the subject line. It would be best to write between now and 2:00 p.m. on Friday as emails aren't delivered on the weekend. Any emails that might arrive after Kelly is discharged will get snail mailed on to her by the kind volunteers at the hospital. Kelly has given a most precious gift and deserves to be recognized and honored. I'd be grateful if you all could help shower Kelly with words of love, encouragement, and appreciation.

Patient.Messages@vtmednet.org

I'm sure that Katie would also love to hear from people. Just type "Katie Smith, ICU M306" in the subject line. Katie will have a new room number in a couple days when she is able to leave the ICU but, again, those great volunteers will track her down and see that she gets her mail. Of course, you can also communicate with Katie through our family email address: smiths@smithfamilyfarmvt.com.

My eyes are refusing to stay open, so I will sign off. Many, many thanks for all the prayers, calls, and emails. The Lord has used you all to bless and encourage us! Thank you!

Between Surgeries

2008-04-15T18:32:00.002-04:00

I am very happy to report that Katie’s surgery yesterday went very well! Hallelujah!! Today is a little harder as she is experiencing some possible side effects from the pain medication (itchiness, blurred vision). Lord willing, she had her last dialysis session this morning. Yipeee! This afternoon she was able to get out of bed and walk a big loop around the unit. It was a bit of an exertion, but hopefully she’ll be up for another walk this evening. After that, the prayer is for a good night’s sleep!

Grandpa Ed is going to sit with Katie tonight while the rest of us gather at the hotel with Kelly and her family for some pizza. We are excited about meeting Kelly’s 13-year old daughter, Amberle. Poor Kelly’s last meal was at lunchtime, so she’ll only be able to drink while the rest of us eat.

The big day tomorrow starts early for Kelly. She has to check in to pre-op at 6 a.m. She will be the first one into the operating room between 7:30 and 8:30. It will probably be a couple hours later before the surgical team is ready for Katie.

We would be grateful for your prayers for a safe, uncomplicated surgery for both of these precious young women.

Transplant Scheduled for Katie!

2008-04-06T21:02:00.003-04:00

Time to fire up the blog again! Over the next week, I'll try to catch you up on some of the highlights from the last 7 weeks, but the exciting news for this post is that Katie has a donor and is scheduled to have her kidney transplant on April 16th!

Katie’s donor is a wonderful young woman named Kelly. We had the pleasure of meeting Kelly and her mom for the first time on February 26th when they came for dinner after a long day of testing at the hospital. Kelly lives in Massachusetts. She offered to donate her kidney after hearing about Katie’s need. We are unspeakably grateful to Kelly. Please pray that we might be able to minister to Kelly and her family as she makes sacrifices to give this incredible gift!

Katie and her amazing donor Kelly

Katie was originally scheduled to have both her kidneys removed on March 19th (a bilateral nephrectomy), giving her 4 weeks to recover before the transplant on April 16th. Unfortunately, she got a serious infection in her dialysis catheter and the nephrectomy had to be cancelled. On Friday, March 21st, after her dialysis session, her catheter was removed. She was tubeless over the Easter weekend (and for her 21st birthday!) and had a new catheter put in on Monday, March 24th, before having dialysis again. Katie is finishing up a course of antibiotics.

The nephrectomy has been rescheduled for April 14th. Katie will get to “recover” on the 15th and then get wheeled back into the OR for the transplant on the 16th. It is a less-than-ideal plan, but the docs have decided it is the best one given all the factors. They feel that combining the double nephrectomy and the transplant into one surgery would just be too long and risky.

Please join us in praying for an uncomplicated, uneventful transplant experience for both Katie and Kelly.

Samuel's home!!

2008-02-18T17:40:00.002-05:00

Praise the Lord!! This battle is won! Be sure to check back now and then. You never know what new adventure the Lord might have in store for us!

No time to write more.....I'm too busy enjoying my family!!

Packing Our Bags!

2008-02-16T23:37:00.005-05:00

This morning, Samuel finally had no detectable level of Vancomycin (an antibiotic) in his bloodstream. He continues to remain fever-free!! We have the green light to go home on Monday if he can get through Sunday without spiking a fever.

Home is within our sights! God has been so gracious to see us through this ordeal. Please rejoice with us!

Happy Valentine's Day!

2008-02-14T23:48:00.002-05:00

It is day #70 and Samuel is doing well! Last week on Saturday, three of his medications were stopped because of the downward trend of his white blood cell count. All three drugs have a possible side effect of suppressing white blood cell production. Yesterday, his count made its first move upward. This is a good thing. Samuel has had a HEPA filter running in his room since he was first admitted, but now we were very close to the point of people needing to wear gowns and masks around him. Praise the Lord, it didn’t come to that!! The plan is to start a new “cocktail” of immune suppressing drugs once Samuel’s white blood cell count has normalized. The transplant team is researching just the right combination of drugs. In the meantime, Samuel has received two doses of a drug that should hold him for a couple weeks until they start the new regimen.

Before Samuel can head home, there are a couple more things to be accomplished. He needs to be able to drink enough in a day to keep himself well-hydrated. For now, he is still receiving IV fluids. He also needs to be fever-free for two days once there is no longer a detectable level of antibiotics in his blood stream. Today’s level was pretty low, so it is possible that tomorrow will start the countdown to going home!

Samuel is getting stronger every day. He has been working with a physical therapist here at the hospital. Today he was well enough and strong enough to stand and play table foosball in the teen room. Despite his physical disadvantage, he creamed me! :) It is so great to be once again laughing and playing together!

A Quiet Day

2008-02-11T22:06:00.000-05:00

Not much to report today. Samuel isn’t quite as perky as he was yesterday. He slept most of the afternoon and didn’t eat much.

His white blood cell count is even lower, which is not good. No medication changes were made today. The docs are just waiting and watching. And so are we.

Birthday wishes for Hannah and a great day for Samuel!

2008-02-10T22:38:00.000-05:00

Yesterday was Hannah’s 19th birthday! Back in 1989, on our 3rd wedding anniversary, I was in early labor while out on our celebratory dinner date. My contractions progressed and our waitress was stressing when she found out why I was sitting quietly with my eyes closed every four minutes or so. It wasn’t a problem for me….one can eat a lot in four minutes! We eventually made a phone call and arranged for Katie (then 22 months old) to spend the night with our friends who were babysitting. Then, much to our waitress' relief, we went directly from the restaurant to the hospital. It was the next day by the time Hannah made her appearance, so now every year on February 9th, we celebrate the gift of Hannah! And what a gift she is!!

Thoughtful, sensitive, caring…Hannah has been an invaluable help during this ordeal. She has kept things running at home and has stepped in as surrogate mom to Esther and Lydia. Hannah, you are great! We couldn’t have survived this without you!!

Yesterday was a hard day for Samuel. After a long night, he was feeling very sick and weak. He has been asked to take at least two walks each day. He did this faithfully yesterday despite feeling so ill. I wasn't sure he was going to make it back to his room. It was hard to see him struggle so.

Because Samuel's feeding tube was clogged, instead of having his pills crushed and flushed down the tube, he had to swallow them whole. This was a challenge for him because of his intense nausea.

The surgeon decreed that his feeding tube had to be removed because it was irreparably clogged. Samuel chose to pull it out himself….brave boy!! The plan was to put a new tube back in on Monday. But the Lord may have another plan!

Samuel is doing SO well today! The difference between yesterday and today is incredible! He has no fever, no nausea, and is eating!! If he can take in enough calories on his own, he won’t need another feeding tube. He took three walks and a wheelchair ride today without too much difficulty. He also had no trouble swallowing his oral medications.

There are still many unanswered questions….What caused his recent fever? Why has he been so nauseous for so long? Why is he suddenly not nauseous today? Why is his white blood count now so low?

Yesterday, only 3 of his 14 daily lab tests were in normal ranges. Today two more are normal, but just barely. The docs are fiddling with his medications, including withholding one of his anti-rejection meds.

Meanwhile, I am just thrilled with Samuel's progress today! Thank you, Lord!! We’ll continue to wait and pray.

News from Friday

2008-02-08T23:45:00.000-05:00

Today Tom and I celebrated our 22nd wedding anniversary! Where have the years gone? I guess it must be true....time flies when you're having fun! There have been some challenges sprinkled in with all that fun over the last 22 years, but God is good and He continues to bless and strengthen our relationship. I love you, Tom!

Hannah stayed with Samuel while Tom and I spent a few lovely hours together. Samuel asked me to be back by 10 p.m. It is the first time I have left his side since this all began. Leaving him in the hands of Hannah and an especially great nurse made it a little easier.

It seems Samuel had a roomful of visitors to entertain him while I was gone! Praise the Lord, it was just the distraction that he needed after this afternoon's discouragement of having two peripherial IV's placed....one in each arm. Ouch!

There was no discernable sinus infection to be seen on yesterday's x-rays, so today the PICC line was moved to the top of the suspect list and the docs wanted it to be removed. Rats! The usual policy is to establish new venous access before removing the old. The new IV's went in just before I left on my date with Tom. The docs wanted to wait until I was present before removing the PICC line, so when I returned at 10 p.m., the IV nurse came and took it out. It was not a fun experience for Samuel. The tentative plan is to put in a new PICC line once he is afebrile (without a fever) for a couple days.

Despite some heavy duty doses of antibiotics, Samuel managed to have a fever again this morning. By late afternoon, his temp was down and he was feeling a little better. By this evening, he was perky enough to really enjoy his visitors.

Today's new surprise is that Samuel's white blood cell count is now too low! The docs aren't sure what that is about, but are making some adjustments to several of his medications.

Samuel's creatinine is back up to 2.50, but knowing that it was once able to get as low as 2.15 gives me hope that he'll get there again.

Prior to Samuel's surgery last week, his tube feeds were running 24 hours a day. When the tube feeding was restarted a couple days after last week's surgery, the plan was to run the feeds for only 12 hours in hopes that Samuel would get hungry and eat more on his own. Unfortunately, the fever has increased Samuel's nausea and decreased his appetite. The nutrition team decided today that he is not getting sufficient nutrition and the tube feeding time has been increased to 20 hours a day. Assuming his tube is functional......

I started writing this post at 11:45 p.m. It is now 4 a.m. I am still up because one of Samuel's midnight meds (that gets put down his feeding tube with a syringe) has clogged up the tube. The nurse has been working without success to get it unclogged. She tried putting Pepsi down the tube in hopes that it would eat away the obstruction. When that didn't work, she called the transplant team. The resident on call suggested that she try Coke instead. He said that it is known to work better. And people drink this stuff?? No success yet. The resident is supposedly coming to check out the situation as soon as he is done stitching up someone in the ER. Meanwhile, the "food" has been disconnected. Presumably, they'll leave it be for tonight and will sort it out tomorrow. I'm going to try and get some sleep.

Here we go again!

2008-02-07T18:15:00.000-05:00

After a couple good days, Samuel is ......... can you guess what I'm going to say?? .......... having some setbacks. He had been doing so well! Dr. G. even used the "h" word (home) yesterday and thought we could aim for a discharge on Tuesday or Wednesday next week. Wow! That was exciting to hear! We'll have to wait and see what kind of impact (if any) today's issues will have.

I won’t bore you with all the details. The worst of it is that Samuel woke up this morning at 2 a.m. with a fever. Shortly thereafter, the nurses drew blood to start some cultures to see if a specific virus, fungus, or bacteria will grow. If something grows, it can be identified and the treatment can be targeted. Each culture bottle gets 5-10 milliliters of blood. They started six bottles this morning. I have lost track of how many times we have gone through this routine in the last 63 days. It is necessary, but unfortunate for Samuel, who is struggling with anemia. He doesn't have any red blood cells to spare.

At 7 a.m., he went downstairs for a chest x-ray to check for signs of pneumonia. Thankfully, his lungs look great!

The risk of waiting to treat the fever until the source can be identified is too great, so until a specific infectious agent can be identified, they will treat Samuel with broad spectrum antibiotics. He was started on two “big guns” this morning. I am grateful that we have these drugs to use when necessary, but it grieves my heart to think about the negative impact these antibiotics have on Samuel’s body.

Late this afternoon, Samuel had a series of sinus x-rays and we are waiting for the results. He has had a feeding tube in place for about 7 weeks now. It goes up his nose and down his throat. People with these types of tubes sometimes get sinus infections if the tube has been there a long time. I’m actually hoping that the problem is “only” a sinus infection. That is much better than some of the other possibilities.

The docs were going to pull out Samuel’s PICC line this morning as it is high on the list of infection suspects. With all the persuasive charm I could muster, I negotiated with Dr. D. to leave the PICC line in place until we could be certain that it is not a sinus infection. He agreed!! There will be untold misery and discomfort for Samuel if they have to take it out, replace it with a peripherial IV for a few days, and then put in a new PICC line.

Samuel says he is doing fine emotionally. He just feels awful physically. Both of us are exhausted. We didn’t get much sleep last night. Please pray that Samuel has the necessary reserves to fight yet another battle. His big enemies right now are fever, headache, and nausea. Thankfully, his pain is under control most of the time. Please pray that the source of the infection will be identified soon.

Day #60....Surgery Report

2008-02-04T23:32:00.000-05:00

Sorry to leave you hanging for a couple days. I just needed a break. Now to get you caught up….

Samuel’s surgery on Thursday night went well. He was in the operating room for just over 2 hours. Despite his elevated white blood cell count and what the CT scan showed, the surgeons did not find an abscess in Samuel’s right renal fossa. That is good news! A bit confusing, but good! There were plenty of adhesions and some inflammation in his abdomen, but no obvious pockets of “traditional infection” (meaning pus). The surgeons had to separate some of the adhesions to be able to work, but some adhesions they left alone, including the bit of bowel that is now attached to Samuel’s new kidney. They used more than two liters of a saline/antibiotic solution to wash out his peritoneal cavity. Doing this disrupted the existing pockets of fluid that he had near his spleen and kidney. These collections of fluid are normal after an abdominal surgery and are, over time, reabsorbed by the body, but since the surgeons had the opportunity, they cleaned these pockets out also.

While they had Samuel open and could see what was what, the surgeons took a biopsy of the new kidney. This also allowed them to watch to be sure there was no bleeding after taking the sample. If you remember, Samuel’s last biopsy on December 6th bled significantly and created a whole set of problems. I’ve been told that the initial biopsy report looks good…no sign of rejection! More detailed information will come later. The surgeons also took out one of Samuel’s lymph nodes for testing. They don’t anticipate that there is anything wrong with it; they are just being overly cautious.

Samuel spent Thursday night through Saturday afternoon in the ICU. His blood pressure was incredibly stable and LOW!! Later on Saturday, he was moved up to the pediatric floor and, would you believe, he is back in his old room…Baird 587!

Sunday was a quiet day of rest. We watched a fascinating program about the history of some foods….chocolate, pizza, hamburgers and fried chicken. Very interesting! We also had a nice visit with Grandpa Hoot and Elizabeth. Tom came to visit earlier than usual so he could leave in time to watch the Super Bowl at home. Inspired by the television program we had watched, Samuel and I decided to order a pizza for dinner. Shortly before I went down to the hospital lobby to meet up with the delivery person, Samuel had an episode of muscle spasms, headache, and intense nausea. He was medicated and eventually fell asleep leaving me to eat cold pizza alone. I’m hoping he’ll be up for eating some leftovers later.

So, here’s where we are right now…..

Samuel has a large, nasty-looking incision down the center of his abdomen and his belly is extremely tender to the touch. Yesterday, he told me that he feels like he has been “cut up and put back together wrong”. His pain is being managed with a scheduled oral dose of Dilaudid, as well as a PCA (patient-controlled analgesia) pump that administers an IV dose of Dilaudid whenever he pushes his “pain button”. It will not allow him to have more than a programmed number of doses each hour. It locks him out if he pushes the button too often. He has had this set-up before so it is pretty routine for him.

Samuel’s blood pressure was ideal (systolic 110-125) on Friday, Saturday, and Sunday. It seemed that the surgeons had unwittingly adjusted some unknown BP thermostat while they were operating, but since this morning, his pressure has been a bit higher (135-149). He continues to be on four different blood pressure medications. We’ll have to wait and see where things go. It is a mystery why his blood pressure was suddenly so low and stable after the surgery.

Today Dr. Di Carlo told me that they have wanted to take Samuel back into the operating room for awhile. But without a clear reason to do it, they were hesitant to take such an invasive step. The combination of the elevated white count and the suspicious CT scan on Wednesday, gave them the excuse they were looking for. So even though they didn’t find the abscess that they “saw” on the CT scan, it seems to be what the Lord used to trigger the surgery. Dr. Di Carlo explained that sometimes a person, like Samuel, with a compromised immune system, isn’t able to mount an appropriate response to an infection. In these cases, it is possible to have an infection without rallying white blood cells (pus) or even having a fever. At this point, the assumption is that Samuel did have an infection somewhere in his abdomen. The washing out procedure has really made a difference. Samuel’s overall condition is greatly improved! His white blood cell count is now lower than it has been in a very, very long time! Today, his creatinine level took a BIG jump down from yesterday’s 2.50 to an all-time low of 2.15!! More of his labs are falling within normal ranges. Anemia is still a problem but, hopefully, that too will begin to turn around.

So today, on day #60 of this adventure, Samuel appears to be making great progress. He is chatting, reading, and eating (a little)….all good signs. We are grateful to the Lord for His goodness! Please rejoice with us and continue to pray for Samuel’s complete recovery.

Recovering in the ICU

2008-02-01T15:53:00.000-05:00

Samuel is in the ICU recovering from last evening's surgery. I'm going to take a nap and try to recover as well. I don't have the brain to write much right now, but I wanted to let you all know that the surgery went well and that Samuel is fine....in pain, but fine. I'll write more later.

Thanks for all your prayers on his behalf!

Samuel headed to surgery

2008-01-31T18:14:00.000-05:00

This morning the decision was made to take Samuel back into surgery. We have been waiting all day to be squeezed into the OR schedule. Samuel has been NPO for over 20 hours.

We just got word that they will be bringing Samuel down to pre-op at about 6:45 p.m. The transplant surgeons will re-open his midline incision that is just healing from his December 7th nephrectomy. They will perform an exploratory laparotomy (abdominal surgery) with the expectation that they will wash out the infected area and investigate other pockets of fluid near his spleen and transplanted kidney. They are also planning to do a biopsy of the kidney. I was told to expect it to be several hours before we can connect up with Samuel again in the ICU.

We covet your prayers.

Two Steps Forward....Three Steps Back

2008-01-30T23:53:00.000-05:00

A lot has happened since I last wrote on Monday night! My dear German friend, Elisabeth, once wrote that she thinks the kidney blog is “better than any thriller”…. you just never know what is going to happen next. I am really feeling that way myself tonight as I write this. I can only shake my head and say, “Okay, Lord.”

As scheduled, on Tuesday morning we took two giant steps forward by leaving the hospital and going to rehab. Our three steps back came this evening as Samuel was transported back to the hospital and was re-admitted to the pediatric floor. We are back in our old room - Baird 587. Here are the details.....

Samuel had quite a send-off on Tuesday morning as he left Baird 5. Nurses, residents, and doctors lined the hallway and sang “For He’s a Jolly Good Fellow” as Samuel was wheeled out through a shower of bubbles. They clapped and cheered for him. It was very touching! I would have positioned myself to get a shot of Samuel’s face had I known what they were planning. I’m told he was grinning from ear to ear.

These are just some of the dear folks who celebrated as Samuel left Baird 5.

This is not such a great photo. Samuel is up ahead in a wheelchair. If you look closely, you can see the bubbles and a blue bubble machine on the left. Abby’s mom (remember Abby?) donated the bubble machine to Baird 5 a couple years ago after Abby spent four months in the hospital. Leslie thought that there should be a big celebration when a child is discharged from the hospital. She’ll be very happy to know that Samuel made his departure through a shower of bubbles. I must say, it did feel like a celebration!

Here is Samuel arriving at the Fanny Allen Rehab on Tuesday at 11 a.m. It is the first time in many weeks that he has had shoes on his feet.

The rest of Tuesday was terribly boring. We had expected to jump right into some physical therapy, but they hadn’t scheduled anything for Samuel. We spent the day just hanging out while all the paperwork and administrative details were worked out. Our room was nice, but it all felt a bit too much like a nursing home. Samuel and I both missed the bustle and energy of the pediatric floor. The nurses were very nice, but there were some medication snafus and other issues with the transition that caused me some stress. I also felt a bit unsettled not having Dr. Guillot directly involved in Samuel’s care. Shortly before midnight, Samuel complained of tightness in his chest and his blood pressure was doing some funky ups and downs.

By Wednesday morning (today), Samuel was in tears with big time chest pain. The doctor in charge ordered an EKG, but nothing unusual was detected. They drew some blood to check his labs. Everything looked fine except his white blood cell count – it was high and almost double what it had been the day before. They rechecked his WBC count again a few hours later and found that it was a little higher still. The next move was to order a CT scan of his abdomen to look for any signs of an infection. Before they could do the CT scan, Samuel had to ingest (via his feeding tube) a liter of the contrast that would enable them to get a better picture. That took a few hours, so at 7:30 p.m. they did the scan. An hour or so later, I got a call from Dr. Guillot who, thankfully, is once again running the show. It seems that, for a third time, a pocket of fluid has re-accumulated in Samuel’s right renal fossa (I think I don’t like that word anymore!). Dr. Guillot wanted Samuel back on Baird 5, so she made the necessary arrangements and he was promptly transported via ambulance back to the hospital where he arrived shortly before 11 p.m.

So….36 hours after leaving Fletcher Allen, we are back! In a warped sort of way, it feels a bit like coming home....familiar surroundings and people who know you and care about you. Samuel is currently NPO (nil per os, a Latin phrase meaning “nothing by mouth”). The doctors are leaving their options open for tomorrow in case they decide to do some type of surgical procedure.

Prayer requests

That the surgeons would come up with a plan that would take care of this infection once and for all.
That they would figure out what is causing Samuel’s chest pain. It could be referred pain.
That Samuel would physically and emotionally overcome this setback. You can imagine his discouragement! He feels like he is back at square one.
That I would know what to do or say to encourage him.

Praise reports

That the infection was discovered before a fever or sepsis set in.
That Grandma Peach and Grandpa Ed “happened” to visit today and were there to give hugs and help with the move back to the hospital.
That Joanne came by for a visit this evening (before we knew about the infection) and just "happened" to bring me donuts. Praying and eating donuts has seen me through many a crisis! Needless to say, I have gained a few pounds during Samuel's hospital stay. Maybe this isn't a praise report afterall!

Stay tuned....we'll see what tomorrow brings.