A Party and a Procedure ...or... A Festivity and a Fistulogram

Wednesday will be a particularly busy day at the hospital for us. Samuel will be "celebrating" his 300th dialysis treatment. He spent all afternoon baking cookies (all by himself!) to bring for tomorrow's party. It will be a time to recognize and thank the team of dialysis nurses who has taken such good care of Samuel for these past 27 months.

A couple months ago as we were driving to dialysis, Samuel said to me, "Some days I wish that I didn't have kidney disease [long thoughtful pause], but then I think about all the nice people that I would never have met." Samuel proceeded to list many of the doctors, nurses, and hospital staff whom he has come to know and enjoy.

After all the terrible and difficult things that Samuel has been through these last 2 years...after all the pain that he has endured...after all the disappointments...after all the days, weeks, and months that he has spent in the hospital...for him to have that as his focus is pretty incredible! I am so thankful for the young man that the Lord is shaping and the amazing attitude that He has given Samuel.

Today is Samuel's 550th day on the waiting list. We are still waiting, but not so patiently. Every time the phone rings, I wonder if it is "the call". Most mornings, Samuel optimistically announces, "Today I am getting my transplant!" One of these days he will be right!

Wednesday will also be a busy day for Esther. As you may know, she started dialysis back on June 24th. It was not a very auspicious beginning. After two dialysis sessions of multiple needle sticks trying to get her hooked up and her fistula working properly, Esther had had a total of 50 minutes of dialysis and was black and blue from her wrist to her elbow. They started talking about putting in an ash split catheter (like Samuel had for so long). As far as I was concerned, things were moving too quickly and in the wrong direction!

I petitioned for a time out and we shipped Esther off to the Jersey shore with some dear friends for a week of R and R. She came back home this past weekend and we are ready to try again. The consensus is now that she has a narrowing (called a stenosis) in her fistula that is causing all the trouble. Tomorrow, while Samuel is partying, Esther will be having a surgical procedure called a fistulogram. I'm guessing they will use angioplasty to try to expand the stenosis and make the fistula useable. If they are successful, a groggy Esther will be wheeled directly up to Shep 4 for dialysis. If they are not successful, I fear we will have to resort to the dreaded catheter. Based on Esther's labs from Monday, we no longer have the luxury of postponing treatment.

I'd be grateful for your prayers tomorrow. As I've probably shared before, one of my least favorite things in all the world is having multiple family members in the hospital at the same time. I can manage okay when everyone is in the same place, but when they start getting spread around the hospital, I have a harder time being calm and serene. On the bright side, I'll likely get my exercise tomorrow running back and forth between the 1st floor and the 4th floor. I sure don't want to miss the party!


Lydia and Esther on Long Beach Island in New Jersey. Thank you, Brian, Katherine, Faith, and Lark! What a gift!

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