THE DATE!!

We finally have the date for Milo's decannulation (trach removal)! Hopefully on JULY 23 Milo will have a naked neck :0) The plan is for him to be admitted the evening of the 22nd and be observed capped while sleeping, on the 23rd he will have yet another bronch and if all looks good his trach will come out. He will stay at least 24 hours after decannulation to make sure everything is alright. I'm keeping my fingers crossed that this will all work out and he does well without the trach. I'm getting more comfortable with the idea, I'm about 85% sure he will be fine. I won't say 100% because I learned a long time ago in this journey there are no 100 percents. I think Milo is about ready for it too. Today he pulled his trach out twice while trying to remove the cap. Once we were in the lobby of the hospital waiting for his prescriptions to be filled and the other was in our backyard. Neither time did he struggle to breathe, turn colors or seem like he cared in the least. I will admit that the 2nd time his trach came out we weren't vey fast at getting it back in. I wanted to see what he would do, and he passed with flying colors. It reminded me of when he would pull himself off the vent and we took our time hooking him back up. I've decided that removing the cap is just a control issue for him, it's something that he can control in his life. If he gets mad he pulls it off and throws it just as far as he can. He also likes to play with it :0)

Now I have to get him to wear a nasal cannula for his oxygen while sleeping and do his nebulizer treatments though is nose and mouth rather than his trach. These are 2 big steps for him. In fact the doctors offered to remove his trach mid June but I just didn't think we could accomplish these 2 things by then. The other day I tried his nebulizer with the face mask and he kept pushng it down to his trach and looking at me like I was crazy and didn't know what I was doing. Ugh, the nasal cannula will be much harder though. Little prongs going up his nose and blowing air is not something he enjoys. We've been using a neonatal cannula since his nose is so small and I've cut the prongs off but he wants nothing to do with the thing. Wish us luck!!