Monday, November 29, 2010

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!

Tuesday, November 23, 2010

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!

Friday, November 19, 2010

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!

Wednesday, November 17, 2010

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!

Sunday, November 14, 2010

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!

Saturday, November 13, 2010

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.

Friday, November 12, 2010

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



Thursday, November 11, 2010

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.

Wednesday, November 10, 2010

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.

Sunday, November 7, 2010

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?