John's Transplant Listing

Transplant. It’s a word we’ve been scared of all of John’s life. At first we were told that his dual diagnosis – short gut/prune belly – would mean that he would never be able to have a transplant, but time and research have changed that. On Wednesday John’s doctors in Omaha determined that they had done all that could be done medically and surgically to rehabilitate his intestines and that he needed to be listed for a liver/pancreas/small bowel transplant. We are waiting for Medicaid approval for this but the nurse expects that John will be actively on the transplant list by Monday or at least quite soon.

Knowing that John is listed for transplant comes with many emotions, mixed to be sure, relief that we are not at the end of what can be done to help preserve John’s life here with us. Sadness that these organs will come from a child who has died, and yet we know that if John dies we hope that his body will be able to help forward either the research to save another child’s life or the life of another child itself and that will bring us a sense of peace in his passing. Fear and worry knowing that survival of waitlist, surgery or recovery are not guaranteed. But we remind ourselves that life here is not guaranteed and take comfort in John’s Baptism, knowing that his life is already preserved eternally no matter how long or short it will be here with us. Concerns about how to handle both the waiting time and then the actual hospital time both of which are undetermined but there are guesses as to how long they will be. Hopeful because there are transplant success stories, this is certainly not a cure but more like a trade of one illness that will eventually kill John for another which he has a much greater chance of surviving for a longer time.

Life on the waiting list will be different than anything we have done before. Most of the children listed through Omaha receive organs before a year has passed from their listing date. Some children are removed from the list because they get better and no longer need a transplant, others are removed from the list because their health deteriorates so that they are no longer able to survive the transplant. Some children have received organs as soon as a few weeks from listing some wait longer than a year, there just is no knowing when the phone call will come that says it’s time to go for the transplant. While we wait there are some things that we agree to, keeping John as healthy as possible, notifying the transplant team of any illnesses or changes in his health, to always be ready to leave the moment the call comes without returning home if we are away from home or taking the time to pack if we are home, to remain in the area where we can reach Omaha within 4 to 6 hours and that one of us will remain with John in the hospital and when he is outpatient at all times, also that we promise to care for John and his organs after they are received and make sure that he has medication, makes appointments and such. The transplant team calls donated organs a national treasure, I like that term and further think of them as a precious gift of life both from God who created them and from the donor and their family who graciously share them.

Surgery itself takes from 5 to 7 hours, but of course anything can make it take longer or shorter. John will go from surgery to the PICU where he could stay for a month or more and then will be moved to an inpatient room in the hospital to recover further, which could also be a month or more. When he is ready to be released from the hospital he will be required to live in Omaha for at least 3 months before he is allowed to return home and may actually require another surgery and recovery time before returning home if they are able to reconnect his new small intestines to his old small intestines so that he will not have an ostomy.

Our minds are reeling with the what’s and how’s of this. There are things we will need help with and cannot do alone. First we would ask for your prayers for the family who will be mourning the loss of their child, for the doctor’s and nurses and other medical staff who will be performing the surgery and care, for John and lastly for us. We are confident that God’s will for John and for all of us is perfect but that doesn’t mean that there isn’t times when we are scared out of our minds, please don’t be afraid to ask questions and encourage us with God’s Word and His grace and mercy, we will need plenty of this, and we know that you are attached to John and can get scared and worried too, so we will also try to encourage you. As the days go by and we are able to process all of the what’s and how’s we will let you know what we will be needing and how you can help for the moment I can only think as far as needing someone to please come get Mellon and either keep her with them or take her to the vet in Marshall to stay until Mark is able to return home and that while Medicaid will pay for John’s hospital stay, surgery and such that it will not help in any way with Mark and /or I staying with him during the time he is hospitalized but will help with housing and some living expenses while he is outpatient. It is our honor and privilege to be John’s parents, we are blessed to have him in our lives and to share him and his contagious smiles and joy with you too as we embark on this new road in John’s life we continue to pray the one prayer that covers all and gives our minds enough peace to think of the next thing that we need to do, Lord have Mercy, Christ have Mercy, Lord have Mercy. In Christ’s love and mercy, Gina