UPDATE

I know many of you have probably been checking daily and waiting for the next update. Things have been busy (as to be expected).

Evan was officially transplanted on March 18th, just one day before his 1st birthday. The days that have followed have been filled with many emotions. Evan's recovery started out very well. He was out of the PICU in 3 days (Wednesday March 21st is when he was moved) and the nurses on the regular floor (3 South) were so excited that he was back up so quickly! Just two days later on March 23rd, his bile bags were removed. Evan was still doing very well. He became more and more active each day and was responding well to his medications. His liver functions were normalizing as the docs wanted. Everyone was very pleased with his progress.

Unfortunately, the luck seemed to stop there. On March 24, Evan spiked a fever of 101.5. The docs immediately ran blood and urine cultures and started him on antibiotics. His blood cultures grew quickly and they believed there to be a contamanent on his central line. They decided it would be best to remove his central line and did so the next day, March 25th. Evan spent all of Monday without a fever. Unfortunately, by Tuesday evening his  fever was back and full force at 102.5. Another set of cultures were taken and a CT and Chest Xray were ordered.

This afternoon of Wednesday, March 28th, Evan received a chest and abdominal CT as well as a PICC line insertion. Not long after the that was done,  the docs were certain they knew the cause of Evan's fevers....there is a hematoma next to the cut portion of his liver. They need to go in tomorrow to drain them. This means that Evan will once again be sedated, intubated, and have his abdomen cut open. It sounds so simple being written out, but it's really not. It's scary to know that once again Evan will be going into major surgery. All I can do at this point is pray and ask that you all do the same. Pray that Evan is strong and can handle this surgery. Pray that this hematoma is the cause of Evan's fevers and that once drained we will not experience any more hiccups. Pray that the Lord guide the hands of the surgeons and watch over everyone in the operating room.

I can't say that I didn't expect hiccups...I did. Having talked to many parents who have been through transplant for MSUD, I know that there are many different challenges that we can face...especially at this point of transplant. However, I also know that parents who have faced even  bigger challenges with the liver transplant still would tell me that I am making the right decision. I know families who almost lost their children during recovery and faced many hiccups on the road to recovery. The same families have told me that despite the difficult recovery, they would still choose transplant over MSUD.

Regardless of expecting hiccups, I can't say I am not scared. I am extremely scared, but I also know that the Lord is here with us and will guide us through this as he has before.

On that note, I am going to head off to get some sleep. I need to be back at the hospital early tomorrow. (Tonight is my night to rest at Ronald McDonald House). I'll update again when I can.