Friday, June 19th

It is with great sadness that we write today. This morning Dylan passed away in our arms at CCMC. While our hearts are broken, we are happy that our little man is now at peace and is no longer suffering. Arrangements are going to be at Funk Funeral Home in Bristol Monday evening and Tuesday morning.

Dylan's condition

Dylan remains sedated and intubated at CCMC. He has been in this state since June 5th, when he underwent a lung biopsy. It was determined that he has a condition known as calciphylaxis. In addition to all his challenges, Dylan's lungs are now compromised with deposits of calcium that can't be removed or treated. He's no longer being considered for a transplant. We're devastated and must face the fact that we're losing our beautiful baby boy. Words can't describe the pain and sorrow we're facing, and our hearts are broken. Selfishly, we all want Dylan with us as long as possible, but we're working toward giving him the peace that he deserves.

Dylan's disposition

I just wanted to mention that in spite of all Dylan's health struggles, tests, poking and prodding and feeling just plain lousy most of the time, he never complains! He remains happy and rarely cries. He is THE BEST snuggler and has been enjoying having Mom and Dad sleep right in his hospital bed with him. He has also been on numerous wagon rides outside with Grandpa T. and Grandma. The picture in the previous post was the night before his biopsy, after one week already spent at CCMC. His health has been keeping the whole entire family up at night with worry, but he remains such a pure joy to be around.

We anxiously await the day when he feels better and can enjoy his life.

Dylan and Grandma Thursday, 6/4/09

Dylan in the PICU

Dylan has been at CCMC since May 28th and is now in the PICU (Pediatric Intensive Care Unit) at CCMC. Dylan underwent a lung biopsy on Friday morning. Dylan is still unconscious and has a breathing tube so that he can recover from his biopsy. He is on 50% oxygen right now and is stable. The doctors unfortunately think that he will remain intubated and unconscious for some time so he can heal.

We have always known Dylan to be a fighter and this is his biggest fight so far. Continued prayers are needed for him to win this fight and be able to come home.

Dylan's struggle

On Thursday, May 28th we brought Dylan to CCMC's Emergency Room to try to get him healthy enough to receive his transplant. He has been coughing continuously and has bumps under his skin in his cheeks and from his ankles to his knees. Numerous doctors have examined him and cannot tell us what the bumps are. We are hoping to have them biopsied so he can be treated and come home.

Dylan's leg was biopsied on Friday, May 29th. The doctors also extracted some bone marrow while he was sedated to try to figure out exactly what is going on. There was mention that he could have a disease which acts and is treated like cancer, called Histiocytosis. This was terrifying news and was found to be wrong. They think the bumps we are feeling are fat necrosis bumps. We are extremely relieved, but are now at the beginning as far as how to explain Dylan's cough and what to do about the bumps.

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.