Well yesterday we got the trach caps and today Greyson had his trach capped for 2 half hour sessions (so a total of one hour with his trach capped today). We are taking it slow and easing him into wearing the cap as he seems to breath a little faster and maybe harder while he has it capped. Oh in case you didn’t get what that is, this means we put a plastic cap over the trach so all of his breathing is done through his mouth and nose, basically it makes it like there is no trach (although it is taking up space in his neck, so there is an effect still having it).
We are praying he adjusts well to having it capped, and does so quickly as we got word this week that his sleep study will be on Feb. 5. That’s just two weeks from tomorrow! For the sleep study Greyson will have his trach capped all night (provided he does OK) and will go without the ventilator or oxygen (at least that is the goal). If this goes well the next step is a bronchoscopy and as long as there is no damage (which we don’t have any reason to believe there is) we look at scheduling a time to spend the night in the hospital so they can take the trach out and put a bandaid on it. (They don’t sew the stoma closed unless something has gone “wrong” and they have to sew it closed)
So pray he stays healthy and adjusts to the cap so the sleep study goes well. I believe if the sleep study goes well that will be the end of the vent so that will be a huge blessing even if it takes a bit longer to get the trach out.
Last night Greyson was so fun. He was laughing at Stacy and I (well hopefully WITH Stacy and I although it was hard to tell!) as we did all kinds of things with him. He gets really wound up at night now and is just a blast to play with. We’ll try to get some more video or at least some new good pictures soon. These are GOOD days and we thank God for every one of them!!!
These are the kind of days every parent wants to have. When it happens, what a blessing it will be to be without all the extra tubes and machines. You two have made it look easy the way you adjusted your lives to accommodate everything Greyson needed. We all know this hasn’t been an easy road but looked at this fantastic child God has blessed you with!! We thank God each and every day for him and you and pray you ALL will continue to touch other lives and bring them to know there is a awesome God. He is always there for us if we only turn to him. Thank you for keeping up the blog for some of our friends we are trying to reach. Blessing to you today and we will be counting down those days with you. Hugs….Gram and Papa
Wow young man – you have a lot going on. We all pray that you stay well, that you adjust to the cap – that is so exciting – and that you have a productive sleep study. What strides and we thank God for each step – and you have absolutely wonderful parents, so we can all say thanks for them too. Good job, all of you!
Take care and God bless,
Judy & Jim, KJ & Laura
As always we will keep praying that this next process goes well, and that soon Greyson will be off the vent soon. He has come such a long ways.
This is all so exciting. Keep up the good work Greyson.
Love ya
grandma Terry