the day my life changed

The day that changed our lives took place in the hospital where we had taken Zach for an intestinal transplant evaluation. He had been surviving by TPN through a central line in his heart for the past 8 months, and before that through feeding tubes in his stomach and intestines. He was only 2 years old, and had spent most of the past year in the hospital without being able to be a kid. And even when he was out of the hospital, he was confined. Confined due to tubes in his body and iv lines being hooked to heavy bags of liquid nutrition and bags of fluids, and due to the risk of illnesses because his immune system was so greatly compromised. His IV pole followed him around the house, from the time he slept in his bed to the bits of time he had energy to play. He was always hooked up to some sort of pump.

Zach had intestinal failure with pseudo obstruction episodes, which meant that his intestines were no longer working. His stomach didn’t absorb or digest formula anymore and was hooked up to a bag to drain the fluids out of it 24 hours a day. And his intestines no longer tolerated the enteral feeds except at a very slow rate to basically try to keep infections down. When his pseudo obstruction episodes hit, he would vomit and gag uncontrollably for hours and days, and be in tremendous pain. He would have to have his stomach hooked to a suction machine to try and prevent some of the vomiting.

His days at home were always short lived, the fevers and infections always returned, FAST and more furious than before. His hospital stays included blood transfusions, surgeries, and high powered IV antibiotics. Never the life we imagined for our sweet boy. We took him to several hospitals in attempts for answers, and that is when our lives changed.

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.

Shortly after that, we heard from Make a Wish. Zach was going to get a chance to be a kid, and to forget about all the illness, and hospital stays and medications for a week. Remembering the day they came to the house to ask this sweet 2 year old if he could have or do or be anything, what would he choose. He knew and answered without a doubt that he wanted to see “Mickey Mouse House”. The smile on his face was priceless. He wanted this, he needed this so much.

During the months while we were waiting on his Make a Wish trip to be finalized and planned, Zach was hospitalized several times a month due to sepsis. He spent many days in PICU hooked to machines and pumps, and having his central line replaced had become routine. But we also learned that his liver was showing some damage from the TPN and he was losing his vascular access. He already had lost of his IV access, so when it came to removing and replacing his central line, it was very risky.

So his doctors decided that though he was not a candidate for a transplant, we could try intestinal rehab in hopes we could force his intestines into working again. Which basically meant that for 2 months, they slowly went up on feeds through his intestines to force them to work. So for us that meant, sitting beside my sweet boy as he vomited, gagged, screamed in pain and slept and not being able to do anything to help.

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.