Mother's Day

We received a call today from Yale that a liver had become available and that Dr. Emre had accepted the offer. We were told that the donor was in Boston, and that his liver was going to be split and part would be given to Dylan and the other larger part would be given to someone else. We were told to be at Yale for 8 p.m. and the surgery would take place in the morning. We were so unprepared for the phone call and had a very hard time packing our things. We would put something in a bag and make a phone call, then repeat the cycle again.

We got to Yale and they began the work-up on Dylan - getting an IV in place, drawing blood and listening to him. We were allowed to feed him, since the surgery would take place around 11 a.m. At 9 p.m. we were told Dylan could no longer eat or drink. We filled him up as best we could and tried to settle in for the night. Dylan got hungry around 1 a.m. but was a trooper and only mildly complained about not be able to eat.

By 10:30 a.m. on Monday, we learned that the organ had been "harvested" by Dr. Emre and he was en route from Boston and surgery would begin at noon. Things began to get very chaotic and some concern arose about Dylan's high white blood cell count. A chest x-ray was ordered and numerous doctors began coming in and listening to Dylan. Some said the x-ray was clear, others disagreed.

Less than one hour before Dylan was to be taken to the OR, a transplant fellow came and told us that Dr. Emre was not going to transplant Dylan because it was too risky. The concern was that if Dylan had any type of infection brewing, the anti-rejection drugs that would begin after transplant would prevent his body from fighting the infection. We were in a state of disbelief for most of the morning.

We have gone through a huge range of emotions today. This morning as we tried to prepare ourselves to let him go into surgery, we were terrified, yet hopeful of a chance for Dylan to lead a normal life. We were deeply saddened that a family of a 15 year old boy had to make the decision to donate their son's organs, and then begin their lives without him. Then we were stunned that an organ slipped away so close to when Dylan was set to go into surgery. We trust that the doctors made the right decision though, and now our goal is to get Dylan healthy so he can receive a new liver soon.

Mount Sinai visit

We were at Mount Sinai today for our monthly visit to keep Dylan listed there. All went well. They are unhappy with Dylan's lack of growth (as are we). The plan is to appeal Dylan's PELD score (Pediatric End-Stage Liver Disease) for a higher number, which will place Dylan higher up on the organ donation list. The doctors hope by doing this, he will get a new liver very soon.

Dave is half way through the work-up to donate a portion of his liver to Dylan. This surgery would be done at Yale. Dr. Emre would like to do this surgery in July of this year.

The plan is to see how Mount Sinai does with the appeal and wait for a deceased donor. Should Dylan's health start to decline, we can go to Plan B and Dave will donate to Dylan.

Friendly's fundraiser

Friendly's on Farmington Avenue in Bristol will be donating a portion of their sales on this Wednesday, May 13th (from 5-8 p.m.) to Dylan. The New Britain Rockcat's mascot is scheduled to make an appearance as well.