Happy New Years!

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

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

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

Merry Christmas to All!

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

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

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

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

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

Line Infection Update

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

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

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

Happy Birthday, Esther!!

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

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



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



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

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

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

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

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

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

Tuesday's Patient Report

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

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

Please keep praying!

All is well!

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

Let the healing begin!

Photos from Thursday and Friday

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

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




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


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

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

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