PMV time :)

The ENT visit went good. Dr. says there is still some floppiness in the airways. We are trying the passy muir valve tomorrow and I am super excited. I just called the Camden's RT to tell her how anxious I am and she said she'd be there at 1:00 so I didnt have to wait all day. ;) she is great...
Dr M just said we just continue to go through slow steps ( i told him i am used to that) to work towards getting trach out and that Camden needs to grow more too. I keep in mind that it is flu season and that there wouldn't be any trach removal now anyhow.

So tomorrow is an exciting day and I hope Camden tolerates the PMV. I can't WAIT to hear my baby!!!!!

Camden went out to lunch today! I dont go in public ( besides drs ) in fear of germs, so this was huge LOL I had to go get my other kids from Nana and we met a a little family owned diner. As soon as I walked in a man started to cough and I wanted to run out but I believe he was choking on his drink. lol not funny, but it made me feel better. ;) Mom sanitized a table in the corner, and we used purell 1,000 times, but we had a nice time. my kids were over-the-top excited to see their baby bro.
It was interesting to see how people act when they see Camden. I had to suction him a few times and no one could see me doing anything because I had him turned around, but you could tell on their faces they were so curious. I know people arent trying to be mean, it is just they stare. And stare some more. Not just 'checking things out' staring, but 'staring in between taking bites' staring. I try to put myself in peoples' shoes that aren't familar with the situation, but it is difficult. It is what I know now, so it is hard to remember that there was a day that i wasnt familar with trachs and g tubes. ;p I do understand the curiosity, I just get emotional about it at times.... ;)

Feeding is slow going. I am slowly increasing his rate on his feeding pump, but he seems to be wretching more. It is not just food related either because he does it in the mornings over secretions. Reflux, food, secretions...poor thing has many reasons to be wretching and gagging. I have wanted to rush things so badly and the other day I was thinking about it and trying to realize that I need to be patient and be thankful that there is a way that he can get nutrition, even if it is through a tube that goes in his stomach. I will continue to work on oral feeds and slowly the rate will get faster and one day he will eat on his own.....

Speaking of his feeding tube, bad me accidentally yanked it out last night. It has fallen out before due to the water balloon inside is tummy leaking, but this time the balloon was still intact and I pulled it right out of his tummy when I was getting him out of his saucer. ouch! I felt soo bad although he didnt seem too upset about it. I quickly put it back in ( last time it fell out during nap and the hole closed and we hadto go to ER )while thinking how the ER was the last place I wanted to be last night. It went right in everything is fine.

Cant remember if I mentioned it, but he is doing great off the ventilator with no issues. I have been giving him humidification here and there with his J Bunn but he doesn't seem to require too much. I think the weather change may change that but we'll figure it out as we go.