Isabella had an appointment in KC yesterday. The Dr. was so impressed with her, as always :) She is setting Isabella up with a humidifier mask to go over her trach when she is off the vent. This will help her wean much easier. The only thing holding her back from being off the vent is the fact that her secretions get thick when off the vent and she gets to coughing so much. This humidification system should help. We are now working on a goal of up to 12 hours a day. That means only needed ventilated at night. Her Dr. said she isn't really using the vent because she is overriding every breath so to speak. So basically in layman's terms, Isabella is ready to come off the vent at a very proactive rate!!!!!!! I think there is a good chance that she will only be on the vent at night by the time the baby gets here. Wouldn't that be great!!!
On another note, Isabella is not gaining weight as fast as they would like. We are increasing her formula volume to hopefully correct this problem.
We are meeting with PT at CMH in March so they can fit her with a stander (helps her bare weight through her legs) and a trunk vest (supports her trunk area to help her sit). Dr. Gratny really feels that the only reason Bella is not sitting on her own is because the upper muscles of her trunk are not quite as strong as they should be. This is a result from her hypoxic event (when she suffered the brain damage) She said she may or may not regain strength there. But the vest will help support her so she can sit up. All of her other muscles needed for sitting are nice and strong. She is ready, she just needs a little help.
So all in all it was a good day with lots of good news. We were released for 8 weeks, so that in itself says something!!
8 comments:
That is great news I hope that she will get stronger and starts sitting up. That is great about her weaning herself off the vent. I will talk to you soon.
From Kim and Adrianna
YAY!!! I am so excited for you guys. Almost sounds like Kaden, ready to do some major vent weaning but having difficulty gaining weight. I think the more and more active he gets, the skinnier he gets. Last night, Nate and I were talking about how skinny he is and that he probably needs more calories (we used to be the opposite when he was little, the docs would increase and we would wonder why). Right now Kaden is having a lot of difficulty with thick secretions while ON the portable vent so he isn't coming off right now, which he is not liking very much. It has been an issue every since he had the bronchitis. I feel so bad for him because he wants to get off and go go go.
That would be awesome for Bella to be off during the day. It will probably make her more mobile too. She will notice that she is not attached to anything and begin figuring out a way to get around and into things!!!
Thinking and praying for you all, like always.
Oh, I haven't heard anything back about those supplies, have you???
YAY!!! Go Bella, get rid of that vent! Awsome news, sounds like a great visit. And my calender is marked, and I don't work then so give me a time. It has been WAY to long since I've seen you guys.
Yaya!!! What a wonderful report! I am so happy for her (and you all) that she is rocking out the way she is. I can't wait to see what she's going to do in the weeks to come. Yay bella!
Sounds great, Bella! It was so good to see you all the other day!
The Lord minister to each and every one of you!
Love,
Aunt Judy
Such an awesome report! I was sad to see that it will be 8 weeks though before I see you again...UGHHHH!!! Anyways it was great to see you, as always!
Love you!
Awesome news...I'm so glad to hear how well she is doing off the vent! That is just amazing!
I hope her stander and vest help her out. She won't know what to think of the new view when she's up more!
Way to go Isabella!
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