Wednesday, December 31, 2008

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.

Wednesday, December 24, 2008

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

Monday, December 22, 2008

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.

Friday, December 19, 2008

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, December 16, 2008

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!

Sunday, December 14, 2008

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!

Saturday, December 13, 2008

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.

Surgery Report

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

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

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

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

Thursday, December 11, 2008

Samuel to Have Surgery Tomorrow

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

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

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

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

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

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

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

Wednesday, December 10, 2008

Smith Family on Stage

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

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

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