Esther to Begin Dialysis Routine on Wednesday

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

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

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

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

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

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


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

Medication Woes

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

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

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

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

Surgery Went Well!

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

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

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

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


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

Thanks to everyone who was praying for Samuel today!

Fistula Surgery for Samuel

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

Happy New Years!

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.