Yep.... this is the good life!
So Isaac got a super huge TV for his room this week!! He's loving it and likes to watch it while he's getting his nebulizer treatments. The night nurses are liking it too!We have to be selective about the videos as he can get overstimulated easily, but he LOVES Baby Einstein...it's a more calming video for him and educational. This one he is watching is about sign language.
Monday's ENT appointment was a bit disappointing as I felt as if I was talking to a totally different doctor than the one I spoke to in February. The big scope of Isaac's airway is on July the 13th, but he most likely will just come out with a larger sized trach. I asked her about the possibility of us trying to cap him periodically to see how well he can breath around it. How else would we know unless we try it, right? She put a finger over his trach for a half a minute and said that he wasn't breathing well enough around it to even try capping. So here we are......on the road to.......no-where! Oh well!
She was talking about getting hearing aides--another thing to think about. We often find it hard to believe that he has moderate hearing loss because he's so sensitive to noises. I will be talking to the doc further about this as well as his speech therapist. This is a hard decision and one more thing I really don't want to add to the plate right now.
-Colleen
5 comments:
Issac that is one very cool tv, you are a very lucky boy, have fun watching your videos. Baby Einstein were a favorite with Junior for several years.
Colleen we will be praying for you as you deal with making decisions.
Since we deal with both Trach & hearing issues I can feel your frustration! But I have to say Austin loves his new hearing aid.
LOVE THE TV!!! so jealous!
Thank you Junior and Janis...the trach and hearing issues are big dilemmas here so I appreciate your support/prayers. My husband is an electronic man so he went a little extreme on the TV. At least It will be fun for all of us to watch!
That TV is awesome!! Marissa's all-time favorite is the Signing Time series.
I am sorry to hear about the disappointments you are dealing with. We are slowly coming to the realization that we may have overlooked some things when it comes to Marissa's airway and we are afraid she might not be decanned as soon as we thought. Nothing concrete right now, just gut feelings, but it still hurts. I feel your pain and I pray every day for you and Isaac.
Well, I hate to be blunt, but what a crapper. I will be praying and hoping things take a different turn.
We have also been told Lillian has hearing loss, and that she is high risk for hearing loss, but they really have no concrete reason why, just that kids with her medical history do. What the heck kind of information is that???
It is so frustrating dealing with so many different docs and multiple issues and all the fears. Do you sometimes feel that even though you want the trach out...there is so much fear tied to it as well? That is how I feel. Just know I'm praying for you and your sweet!!
PS-that is one heck of a TV!
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