Welcome to Team EJ
On April 5th, 2011 EJ had his Transplant Evaluation Meeting with the Doctors. He’s had a rough year (from early November to July), he’s been in and out of the hospital about more then a dozen times. Most of the visits were due to viral infections and some related to his liver. The team at Children’s decided in early March that it was time to proceed with getting EJ approved for his liver transplant so that we can begin the process. The approval process includes liver analysis, ultrasounds, psychiatric evaluation (this ensures he’s in a stable home), heart evaluation, financial approval (insurance), meeting with post transplant team, meeting with organ coordinators, meeting with surgical team, etc, etc, etc….let’s just say we had a very long day.
Throughout this process and throughout the last 18 months our intent was that we were going to go the living donor route with EJ. This would give EJ a liver when he needed and it could be planned to occur while EJ is still in relatively good health. The surgeons and team at Children’s evaluated EJ’s case through todays process and decided that since he also needs a portal vein reconstruction. The living donor method will not give them all the pieces they need to give EJ the best chance. This was/is a huge blow to Rachel and I as this further complicates his situation. The team and our plan was to have a living donor and to have his transplant completed in the next few months.
The “Portal Vein” supply’s blood to the liver and other organs, in EJ case his portal vein looks to be clotted/blocked. This does not happen to all children – in EJ’s case it creates another issue that needs to addressed during transplant. Taking a piece of a living donor’s liver would give EJ the Liver he needs but they also need some veins to reconstruct his Portal Vein – they can take this from the donor. So that leaves us with the traditional method of getting the pieces – WAITING.
The listing process is based on a variety of things including current liver function, match a donor with EJ, and relative health. The scoring process is determined on these results. The number systems starts at -10 and can go as high as a positive low 40’s number. As explained to us a number higher than 30 means that the recipient is close to the top of the list. Anything lower than 20 and the recipient may be to low on the list unless the donor liver matches the recipient liver in size, age, and location. The score is also recalculated every 3 weeks to ensure that patients that are getting worse will go higher on their score.
EJ’s estimated score when listed in a week will be a 10 – another shocker to Rachel and I as this means he’s not sick enough to get a liver soon. The doctors said they can write a letter to UNOS to get him listed with a higher score which will help.
So for now we WAIT, more than likely he will have to get a little sicker to get his number up so that we can qualify for a liver. That’s tough to take for us. EJ has his good days and his bad days. He’s fussy and uncomfortable as his belly is fully of fluid. We’ve learned to deal with it and learned to know when something is not right. He’s a big Mickey Mouse fan and we can’t wait to get his new liver in so we can take him and his sister to Disney World!
On Good Friday, April 22, 2011, EJ was added to the National Transplant List. On August 1, 2011 at 1:09 am we received a call from Organ Procurement at Children’s Memorial Hospital that EJ had received a Liver Offer. God answered our prayers and at 2:10 pm EJ went into surgery. Words cannot express the gratitude we have for the Angel who gave the gift of life to our baby by being an organ donor. He will forever have a special place in our hearts.