We made good progress today. His morphine was weened from 8 times a day to 6. He successfully came off the high flow oxygen to the normal nasal cannula which means he can begin to learn to eat by mouth yay!!!! Speech is supposed to come tomorrow to work with him and give us the OK.
PT and OT came by and are going to come daily while we are here. He took 3 steps today which is great! He is getting his strength back. I notice a huge difference in that. He is able to sit up and hold himself up without shaking.
We replaced his g-tube (Twice). The first one the nurse put in was WAY to long and stuck way out. I told her the correct size but the system had something else. I called my husband to grab our extra at home and double check and the size I gave was correct. She then said she didn't know why formula wasn't coming back out and wanted to put dye in there and get x-rays to make sure the tube is far enough down. I told her that since he had not had food in an hour and before that was only on 45ml/hour the food would be digested by then so that is why formula isn't coming back up. But I humored her and agreed to the x-ray. Guess what, it was fine.
I have to chuckle because the day before I was worried that Jake was way too puffy. I told the docs I thought he needed lasix and everyone told me no he is not positive on his fluid balance so we don't think he needs it. The next morning I came in and the nurse told me "The doctors thought he needed lasix so we are giving him a few doses today". Uhm hmmm that sounds familiar lol. I know my boy.
So overall he is doing great. His spirits are down but he is making a lot of progress. Hopefully the Bronche looks great on Monday and we can blow this town. We will have to come back in a month for another Bronche but at least we can go home for a little while.
Thanks as always for keeping my beautiful boy in your thoughts and prayers. It is hard watching him so sad and defeated but I know he is making progress and we will be home playing soon.
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