He had been sent to Pittsburgh for an intestinal transplant evaluation, a very invasive and dangerous surgery. There we saw a neurologist who performed several tests and told us that the probability of Zach having a progressive and fatal disorder that in most cases kids diagnosed this young don’t live past 5 yrs old, was very high. And at that point, the doctors decided he was not a candidate for a transplant, they could not do a transplant knowing that it would not make a difference in the end. They decided there was nothing they could do to help us.
Zach had been through so much in his short life already and this seemed like to us total torture, but we went through it. It was our only option at this point. If he lost any more central lines, it could be the last. Every replacement meant another surgery, another anesthesia, another race to get it him surgery before his sugar dropped to dangerous levels. Every infection meant new bacteria, more antibiotics and antibiotic resistant bugs. He was in such a dangerous place with his health. When he got sick he could go from normal to 105+ fevers in a matter of minutes, and with his fevers came his autonomic dysfunction symptoms.
So we went with the plan, we drudged on through the pain, through the vomiting, the screaming, the heart break. It was the longest 2 months and so hard to sit and watch your child suffer.
In retrospect, I am glad we did, he survived. He got to come home with no central lines, surviving
on enteral feeds alone.
To explain my feelings during all of this, is simply not in my capability. To be told that your son would not survive and to see him in the state he was in so many times was unimaginable. I have never been a person to show my emotions to everyone. I would wait till I
was in the car on the hour drive back to my see my other son, who would have to go days without seeing me, and I would cry. I found myself in love with a song by The Band Perry, If I die young.
Something I never wanted to imagine but was so much a reality. And I prayed, it's all I could. I felt helpless and alone. Trying to talk to friends or family was a mess, no one completely understood what I felt.
February 13th marks 2 years since Zach came home from the hospital after his rehab was over. 2 years since his central line was removed and he got his life back. 2 years of not being afraid today would be the last day I got to hold him or see his sweet face