19th Update

It has been two weeks since my last update. Sorry, I just haven’t found the time to compose and send. Samuel is still in the hospital and doing OK. Samuel was doing good breathing on his own for three weeks before we came home; however, he was slowly requiring more oxygen support. We took him home and had no problem until the following day when began to have issues breathing. We finally took him to the emergency room at Cardinal Glennon. Samuel stopped breathing and we put him on a ventilator which breathed for him thru the night and the next morning he began breathing on his own again. The reason this happened is because Samuel is not taking deep enough breathes to expel the required amount of carbon dioxide, so over time it builds up in his system and creates an imbalance which will shut down his breathing. Samuel can be off the ventilator for a period of time, but until he is able to clear his own lungs he would die without it.

We are no longer in the neo-natal ICU at Cardinal Glennon. The emergency room transferred us to the pediatric ICU for a few days and then they transferred us the TCU (transitional care unit) in preparation for going home. Our home ventilator was delivered to the hospital and we were training on how to use it and the plans were to go home the beginning of next week. Samuel’s pulmonologist (lung doctor) who was working on the requirements for us to go home, left on vacation and Samuel was assigned to a new pulmonologist. We were blind-sided a couple of days ago when he informed Evette that he had an ethical issue with sending Samuel home on a ventilator and was calling for an ethical committee review board. He made this decision by looking at Samuel’s medical record only. He never introduced himself until he spoke with Evette to tell her of his problem and he never even physically examined Samuel before his decision. He spoke to her about his concerns of the quality of life for Samuel and our family. I’m not sure who gave him the right to dictate the quality of life for our family or to determine the values we teach our children; I thought God gave us that responsibility as the father and mother.

I don’t know much about this new health care program they are trying to pass, but from what I do understand, if it does pass we wouldn’t be talking about this situation in the future because we would have once again given up our rights and the rights of our loved ones who can’t speak for themselves. We have been told that they can choose to not allow Samuel to go home on a ventilator, but that would not be a wise decision on their part because we will not accept that answer. This review could go as early as this afternoon and we would appreciate your prayers. I will send another update as soon as we have more information.

Yancy