We are learning that God’s plan is not always our plan and trusting in Him is the most important element of this ordeal. Biliary atresia was certainly not in our plan! If you look it up online, it can paint quite a grim picture of a life with this disease (especially if you are sitting in the hospital waiting for test results). It most certainly leads to liver transplant at some point in the patient’s life. That point is coming all too soon for Thatcher.
Rather than re-live the last four months since his diagnosis, I’ll just summarize in saying that they have been spent in and out of Vanderbilt Children’s hospital with IV antibiotics, weekly/bi-weekly check-ups at the liver clinic, lots of bloodwork and needle sticks, and a twice daily routine of meds to keep him going strong. He’s quite the high maintenance little boy! After his first whirlwind trip to the Vandy emergency room following labs from his 2 month check up, Thatcher underwent a major surgery on September 27 called a Kasai procedure. This procedure “re-routes” the intestine directly to the liver in hopes that it will allow bile to drain from the liver – a critical function that Thatcher’s liver cannot perform on its own. Thatcher does not have the necessary biliary system that would normally do this task. This was quite a day. We felt so hopeful and terrified, but at least they were doing something to fix our son.
Unfortunately, Thatcher’s Kasai procedure did not work, or drain, as was hoped. Apparently only 1/3 of them do. Figuring that out during the first 3 months after the procedure (the time period they allow to determine if the Kasai works) was filled with ups and downs as we waited to see if Thather’s biliruben would fall (biliruben is the by-product that he is not excreting properly and what causes his jaundice or yellow skin. Biliruben also causes itching). Knowing what we know now, the Kasai really only buys the patient time to get bigger and in better shape for a future transplant. In short, Thatcher came to this earth with a dud liver so we’re going to get him a new one!Actually, we will find out much more this coming week about Thatcher’s new liver and what it will mean for his life. As a “non-draining Kasai” we were told Thatcher would need a liver transplant before his first birthday (another bad day). After much deliberation, we are making the trek to Pittsburgh, Pennsylvania Children’s Hospital for our transplant evaluation scheduled for 2/1 – 2/3. Oddly enough, we are somewhat excited for this 3 day doctor’s appointment and what it will reveal. I feel like we are beginning our transplant journey here and making the first steps toward truly healing Thatcher.
I say “our” transplant evaluation because I will also be evaluated to see if I am eligible to be a living-donor. At his check up on January 7, we met with Vandy’s pediatric liver transplant surgeon, Dr. Kelly (Vanderbilt's pediatric liver transplant program is still "off-line" for now pending staff or other administrative issues but Dr. Kelly performs this surgery elsewhere for now and will likely be in on Thatcher's surgery). This meeting with the surgeon proved very informative and sort of changed our whole understanding of where we are with Thatcher's case. The fact that Thatcher is under the age of 1 in and of itself puts him in a separate, higher risk category. Come to find out, he is also a more rare blood type - B+, like me. This simply means he is less likely to find a cadaver liver...pointing us to the living donor option. We were grateful to learn this since it affected our choice of tranplant facility. We chose Pittsburgh despite the long distance away because they perform far more living donor, under age 1 transplants than anywhere else. We feel comfortable about our decision but are terrified of the strain that 3-6 months away from our home and Amelia will bring. Next week will provide a glimpse into what that may be like.
Next week will be the longest I've spent away from Amelia (sadly). We head out Monday morning with our car packed full and Thatcher in tow. Unlike some, we have never really traveled very far with young children. It’s a 9.5 hour drive so we plan to add a couple extra to that. We will likely drive back Friday. We find out Monday if we get to stay in the Ronald McDonald house attached to the Children’s hospital, but if not, there are other similar facilities they arrange for us. Thatcher’s evaluation will begin Tuesday morning with bloodwork and end Thursday afternoon with bloodwork with consultations, ultrasounds, and EKGs in between.
Since I am of the same blood type (B+) and passed a few over the phone questions (between age 18-55, not diabetic or obese, etc.) showing I am fairly healthy I will be tested at a separate, adult facility on Wednesday and Thursday. Apparently about half of the transplant patients under age 1 are living donor (for example, they did 9 less than age 1 transplants in 2010 and 5 of these were living donor). I am the most likely candidate for this since I am B+ and Thatcher can only receive a liver from another B or O person. (Unlike with the cadaver, he can receive a living donor organ from B or O regardless of (+) or (-) but the cadaver has to be B+). BJ was tested last week and found he was A (yet another BAD day!) and now he has shingles!!
**Yes, BJ has shingles and was told not to handle the children and Amelia has a stomach bug...please pray for everyone’s healing...mine too – I cannot get sick right now!** (I am new to blogging but feel this information deserves its own post!)
I am so grateful for the living donor option the more we read about it. It is a serious surgery, but has a .2 percent chance of resulting in death for the donor (1 in 500). I am glad that it's an option considering Thatcher's odds of finding a cadaver. If we can find a living donor match, Thatcher may not have to get as sick before his transplant. I pray to God that I can give him life again...do you know how many times I will throw this up to him as a teenager (just kidding of course)?? There really is no decision to be made.
The children's hospital and adult facilities are about an 8 minute drive apart. I hate that I cannot be with Thatcher for all of his evaluation so please keep BJ and his shingle ridden body in your prayers (poor guy)! The evaluation will answer many of our remaining questions I'm sure and will hopefully place Thatcher on the waiting list. Below is our schedule if you’re wondering what we’re up to next week!
JESSICA LINK
WEDNESDAY 2/2/11 -
Approx 1pm REGISTRATION FASTING BLOODWORK (Fasting 12 hours prior. )
2PM TRANSPLANT ADVOCATE 7 Main, Starzl Clinic, Montefiore
3:45PM TRANSPLANT SURGEON 7 Main, Starzl Clinic, Montefiore
4PM HEPATOLOGY 7 Main, Starzl Clinic, Montefiore with Dr. Malik Waiting area D
THURSDAY 2/3/11
8:30am CT, CXR, EKG 1ST floor, Radiology Dept., Presbyterian
BRING A SUPPORT PERSON FOR CT. Fasting 3 hours prior to testing.
12PM BEHAVIORAL HEALTH 7 Main, Starzl Clinic, Montefiore
1PM SOCIAL WORK 7 Main, Starzl Clinic, Montefiore
Thatcher
Tuesday, February 1, 2011
8:30am Lab Blood work: Benjimin will have blood work in the Frog (F) Suite this morning.
9:30am Psychological Evaluation: Benjimin will have an evaluation with Diana Shellmer, PhD. The appointment will occur in the Hippo (H) Suite which is located on the 3rd floor in the Main Hospital Building.
11:30am Social Services: Benjimin will have a consultation with Debra Phillips, MSW. The appointment will occur in the Elephant (E) Suite consult room which is located on the 3rd floor in the Main Hospital Building.
2:30pm Radiology: Benjimin will have an ultrasound of the liver and a chest X-ray at this appointment.
Wednesday, February 2, 2011
10:00am Teaching: Benjimin will have a teaching session with Beverly Kosmach-Park MSN, CRNP.
1:00pm Hepatology consult: Benjimin will have Hepatology consult with Ben Shneider, MD. The appointment will occur in the Elephant (E) Suite.
Thursday, February 3, 2011
9:15am Transplant Clinic: Benjimin will have an appointment with the Transplant Surgeon in the Elephant (E) Suite which is located on the 3rd floor in the Main Hospital Building.
11:00am Anesthesia Consult: Benjimin will have an Anesthesia consult with a pediatric anesthesiologist. The appointment will occur on the 4th floor of the Main Hospital Building.
1:00pm Cardiology Consult: Benjimin will have an EKG and ECHO at this visit. The appointment will occur in the Hippo (H) Suite which is located on the 3rd floor in the Main Hospital Building.
Lab Bloodwork: Benjimin can have bloodwork done in the afternoon in the Frog (F) Suite.
