On January 9 Joshua had a bronchoscopy done at Children's to take a look at his airway, in hopes to wean him from the trach. Since he had to go under for this procedure we also had an ABR done to test his hearing, after putting tubes in his ears. So it was kinda like a 3 for 1 deal in terms of having to be put under. I took Josh early in the morning for this outpatient procedure and it was a very long day. He did really well, although it is never easy to see your son in recovery looking like a bit of a mess. When I spoke to Josh's ENT (who we really like a great deal) it was determined that Josh has a "complicated" airway and to wean from the trach would not be possible at this point. However we had the hope of trying another bronchoscopy in 6 months and see if it was possible at that point. 6 months would mean July and my goal was to have Josh trach free by one year. So I decided he would have the bronch in June and if we could be weaning by his birthday I'd count it! In terms of hearing it was determined that the tubes would not be very helpful, and the results of the hearing tests proved Josh had profound hearing loss meaning he could hear a jet plane if he was standing right next to it, probably could feel the vibrations more than anything. This was not all that upsetting to us though as we had taken sign language classes in October and November because we knew he was going to have some hearing loss. We had been working with both boys on simple signs, but now we knew we would use it quite a bit more. The day at Children's was not a loss, we came out with some good information and some hope for good progress in the future. It was my first experience down at Children's with Josh as an outpatient and I will say I was not very impressed with the facilities. As we get into Josh's longer stays at Children's I'm sure more of our disappointments with Children's will come out (there were some good things too though), but we have grown to love Central DuPage and we're glad its our hospital.
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2 comments:
It was right around this time that grandpa and I started taking signing lessons. We would sit at the kitchen table every morning practicing and testing each other on new signs. Learning to sign was actually fun and we were very interested in communicating with our grandson.
Wow I still need to take Signing lessons...LOL! I am trying to find somewhere around here to do it where it doesnt cost an arm and a leg.
I love hearing Josh stories and I wish I knew you all when it was all happening.
I also noticed that Josh's ear looks like a heart, very sweet.
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