As you can see we worked at making the hospital as fun as we could. Greyson really wasn\u2019t feeling very well but did enjoy getting out of his room for a quick spin. It was really funny because they put this \u201cno-nos\u201d 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 \u201cno way!\u201d and kept it out like it was locked.
\nSo this morning Greyson\u2019s 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\u2019t tell what they were and once past them Greyson\u2019s 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\u2019s body rejecting the stent. So basically Greyson\u2019s 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.<\/p>\n
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\u2019t yet wear his Passy Muir valve which means all his air goes in and out the trach\u2026..so no air past the vocal cords means no voice!) you almost wouldn\u2019t know he had such a wild week.
\nSo 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\u2019s 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\u2019t look that bad (all this is relative of course, it was highly inflamed and swollen) now it didn\u2019t look great, but not bad. So the plan right now is to wait and see (haven\u2019t we been here before ha!) what happens over the next month or so. There is a chance Greyson\u2019s 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\u2019t stay as it is and he can\u2019t breath well enough with it we will reschedule the trachea resection surgery and go through everything we were prepared to go through this time.
\nSo while it is a bit dissapointing it still may work out in the end. If it doesn\u2019t 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 \u201cnormal\u201d 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!
\nSo 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 \u201cbuh bye!\u201d Well he wasn\u2019t actually saying it since as I\u2019ve mentioned he can\u2019t talk, but you could see him mouthing the words as he waved. It was SO stinkin cute!<\/p>\n","protected":false},"excerpt":{"rendered":"
As you can see we worked at making the hospital as fun as we could. Greyson really wasn\u2019t feeling very well but did enjoy getting out of his room for a quick spin. It was really funny because they put … Read More