The team at Vanderbilt have run every test they can think of, and have no idea how he got so sick. They think he contacted common pneumonia, and somehow aspirated overnight, causing his immune system to over react. His immune system fought the infection, but somehow wouldnt stop when it was gone, causing the damage to his lungs. What they can tell us us he is one of the sickest children they have ever seen, as far as lungs go. He was in full respiratory failure when he was transferred, and has had a long road already. They also say the other organs they have tested are in good shape. He is a perfectly healthy 17 year old, with a bad set of lungs. His health is the only reason he has survived this episode.
They have asked us to start the process of sharing his information with lung transplant centers, and we agreed. It doesnt mean he will need the transplant, but the team want to make sure he gets the best care possible. They want to consult and share information first, but also they want to see if he is a candidate for a transplant, and if they need any more tests before they ask us to make this decision.
Vanderbilt Childrens Hospital is in Nashville TN. My wife and I, and our other 3 children live in Johnson City, TN, approximately 277 miles away. She had to quit work to stay with him, reducing our annual income by 1/3. We are currently driving 1400 miles a week, between two trips to Vanderbilt and back, plus normal driving back home, and I am running out of vacation and sick time days at work. My work will allow me to take days without pay, with no negative repercussions, but its still another loss of income. If he has to receive a transplant, it will most likely be at Duke University, which is about 220 miles from home. We are currently staying in a sleep room provided by the hospital at no expense, but we arent allowed to let our youngest daughter, Addison age 4, stay with us. Mysti typically stays Sunday through Thursday, and I come down Thursday after work, and stay till Sunday. We see each other about 5 hrs a week, but one of us is with Isaac 24/7.
We dont know how long it could take for Isaac to heal enough to support himself without a transplant. But he has been on the highest level of support for over 10 weeks now. Again he is healing, slowly, but the doctors are afraid he will suffer a major setback or infection before he gets close enough.
We intend to use any money graciously donated to offset the expense of travelling, and for medical expenses. I have insurance through my employer, but we arent sure how much they will cover. Between travel expenses, car maintenance, insurance out of pocket costs, fuel, loss of income, and other unknown expenses we are only staying ahead by the grace of God, and the loving donations given to us from our home church, other local churches, the friends and staff from Isaac school, and family.
- Georgia &Trula Holt & Morehead
- Melanie Fillers
- Juanita Lambert
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