And this is what looked like Wednesday night...
Now the ventilator lives in the next room with all the other medical supplies
If you haven't guessed by now, Milo is officially OFF THE VENTILATOR ALL THE TIME!!!
Last weekend Milo didn't sleep much at all, he just kept disconnecting himself from the ventilator or would wake up when you hooked him up. There were a few long nights of no sleep and no naps for 3 days, he was a tired grumpy little guy. He had his pulmonology appointment on Tuesday so I mentioned his newest trick figuring they would laugh and say sorry but I did not expect them to say that he could be off the vent at night. What a nice suprise. Instead of the vent at night he now has a trach collar with humidification to keep his lungs from drying out. It is so much smaller but a bit noiser than the vent. It has taken a few nights to adjust it properly and to get Milo used to wearing it. Last night Milo slept soundly for 10 hours and woke up a pretty happy little guy. At first it's a little scary not having the vent at night because I knew it would alarm if anything strange happened and the new contraption doesn't. He still wears his oxygen monitor at night so that is reassuring ;0)
Here's a new list of Milo's recent accomplishments:
- runs, runs, runs
- turns in circles when he is happy
- CLIMBS on everything
- is trying hard to jump
- had his g-tube changed from a Bard Button to a new mini button
- gained weight -- about 2 pounds in 4 weeks!!
- grew about half an inch too
- now gets real food blended up through his g-tube
- makes lots of noise but no words yet
- has mastered two words in sign language--all done & go
- put a 9 piece puzzle together with minimal assistance
- follows simple directions (when he feels like it)
- went to the zoo for the first time, Grandma & Dylan came with us
- went to the Children's Museum with Dylan & trach friends
- learned that hammers are heavy when lifted above the head & air compressors make scary loud noises when you push the wrong button
2 comments:
Oh Janay, that is so awesome!!
I am so proud of you Milo for being off the vent and all your new accomplishments!!
Janay, how is that new g-tube button working. Marissa is going to need hers upsized soon and I'd love to get some info on what Milo's is called and how it is working for you.
Lots of love,
Alicia
WONDERFUL news Janay and Milo!!! Yeah way to go! That's typical Milo- he makes all the rules!!!! ooh....about the compressor- Dawn from the trach boards (and fellow Denver tracheosto-mommy) said she didn't use the mist collar at night. Instead she would wake up a few times a night and put in saline through his HME. Personally this scares me, but it worked for her son! I guess it gets to the point where you'd do anything not to hear that compressor!
Thanks for the great news (and updating your blog!!!! :P )
PS: DO you need an amend. 51 sign? We picked up a dozen of them last night. I can drop one by next week.
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