Settling In

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!

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!

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!

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!

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

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

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

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!

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

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

Hanging out in Pre-op

T minus 18

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

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

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!

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!

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

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

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!

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

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!

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!

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!

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!

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

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

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

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

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

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

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

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!

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

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

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?

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

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

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!

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!

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!

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!