Sleep Study

Tonight, John and I will be spending the night at Texas Children's for what will be something like his 15th sleep study. And if everything goes well, it could be his last. In the early years, we thought of sleep studies as being very important. Each time he had one, we thought it could mean his last. But after being disappointed over and over again, we came to think of them as just another hurdle on this journey. We stopped getting our hopes up and started to think that he would never be able to get his trach out because of the apnea. We came to realize that the apnea is not going away completely. Yes, it has gotten significantly better. At one time he was having 100's of apnea episodes an hour and as of his last study, he was having only about 5. Praise the Lord for that improvement. But it is unlikely that he will ever be completely rid of the apnea, although not impossible. We know that nothing is impossible for God and if he decided to, he could completely take away the apnea tonight. But we do know that for the last 4 months, John has slept without ventilator support and without oygen support. We have gotten our hopes up again, and tonight is one of those important sleep studies. We have to be at the hospital at 6:30 this evening, and will spend the next hour and a half or two hours getting him all wired up and ready for the study. I will stay over night with him and Tommy will come home. After what will surely be a restless night for me, we will start packing up around 6am and head home. If all goes well, and the doctor feels that he is still capable of getting enough rest without ventilator and oxygen support, we could begin the steps of decanulation (removing the trach). This will be about a 2-3 week process. It will be at least a week before we get results back, so we are looking at the possibility of decanulation sometime in July. But again, that is us being optimistic. It could in fact take a little longer, or it could be decided that he is not ready. Please pray for our family as we go through this process. Most importantly, we want God's will to be done. If it is God's will, then we are more than ready for the trach to come out. Pray that it will be absolutely clear to the doctor which way we should go. Everything with John has been a borderline decision his whole life. This one time, I want it to be clear. I certainly don't want the trach to be removed if he is not ready. Also pray for us tonight. I don't dread the restless night as much as I dread the getting ready part. It is such a tedious process to get all of the electrodes and wires on him. Keeping him still for that long is impossible. And lastly, pray for Tommy and I to maintain strength and peace of mind no matter what the outcome of this sleep study is. Each day is a new challenge. Thanks again for all of your prayer and support over the years. It is through your prayers and God's grace that we have made it this far.