As you can see we worked at making the hospital as fun as we could. Greyson really wasn’t feeling very well but did enjoy getting out of his room for a quick spin. It was really funny because they put this “no-nos” on his left arm to keep his IV safe. Well for quite a while Greyson would only hold his arm straight out to the side. We kept telling him he could lower it, but he said “no way!” and kept it out like it was locked.
So this morning Greyson’s Dr. came in and took him to the operating room to see what was going on. We were shocked at how fast it was before they were bringing him back to his room. Unfortunately things did not look good in his airway AT ALL. His vocal cords were so swollen you almost couldn’t tell what they were and once past them Greyson’s airway was completely blocked with fibrinous tissue . This is tissue that can form as a result of irritation that is the first step in the development of scar tissue. This was either because the stent was moving which was irritating his airway, or simply Greyson’s body rejecting the stent. So basically Greyson’s airway was on the way to completely scaring over, scary! So the Dr. took out the stent, cleaned out all the fibrinous tissue, and brought him back to his PICU room. We then waited for him to wake up (Greyson, not the Dr.) fed him some food, made sure he was doing OK and even allowed Greyson to stand in his walker.
As soon as we put him in his walker Greyson headed for the door! We stopped him and got him all unhooked and then loaded up and came home. Greyson is feeling much better this afternoon and aside from having no voice (he can’t yet wear his Passy Muir valve which means all his air goes in and out the trach…..so no air past the vocal cords means no voice!) you almost wouldn’t know he had such a wild week.
So what will happen now you ask? Well that is a good quesiton. As I think I said in post earlier when they went in to do the surgery wednesday Greyson’s airway actually looked better than it had the last time they looked. Then as a part of placing the stent they dilated his airway before putting the stent in. Well when they took the stent out his airway didn’t look that bad (all this is relative of course, it was highly inflamed and swollen) now it didn’t look great, but not bad. So the plan right now is to wait and see (haven’t we been here before ha!) what happens over the next month or so. There is a chance Greyson’s airway will stay how it is even without the stent holding it open. If that is the case and he can breath good enough we will try capping the trach. If he can still breath good eventually we will just take the trach out. As has been the case before those are some pretty iffy ifs. If it doesn’t stay as it is and he can’t breath well enough with it we will reschedule the trachea resection surgery and go through everything we were prepared to go through this time.
So while it is a bit dissapointing it still may work out in the end. If it doesn’t and we still have to have the resection at least we will know we did everything we could to avoid that serious of a surgery before going ahead with it. In the meantime we will be working on getting back to our “normal” life. We are praying Greyson will be able to tolerate his Passy Muir valve again soon as it means MUCH less suctioning for us and we get to hear his cute voice. Which reminds me of one last great story!
So we knew we were going to be able to go home and were feeding Greyson and doing all the things we needed to get done in order to be discharged and Greyson started waving and saying “buh bye!” Well he wasn’t actually saying it since as I’ve mentioned he can’t talk, but you could see him mouthing the words as he waved. It was SO stinkin cute!