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Wednesday, October 26, 2011

Urology Appt and Bronch Results

It was a long day yesterday.  Chuck went with us so we had planned on leaving at 8:00...a few minutes before he ran to get gas in the van.  Since the windows had a lot of dew on them, her rolled them down so he could see.  unfortunately the passenger window wouldn't got back up. He had to take the whole window apart and get it back up so we could go.  He found out the motor had gone out in it, so he got the window almost all the way up.  He got the part later so he can fix that made us 1/2 hour late leaving but since he was driving and could drop us off. we go there on time.
  The testing for urology was first.  While the nurse was setting up and waiting for the dr we talked about Hannah's problems and I asked her about the Mitrofanoff and she said that she would definately qualify.  She brought it up to the dr that did the testing and again the dr that we saw in clinic.  He is going to go ahead and schedule it, it should be a simple procedure unless they get in there and she doesn't have an appendix.  Then they will have to do more.  This would make things nice for me cathing her but really good for Hannah!  He asked me what drs does she see?  I just kind of looked at him and he started asking different drs if we see, then he asked if we are followed by the medically complex team?  I told him no but the funny thing was it was listed on my paper to ask the drs why we aren't followed by them.  He got us an appt on Dec 8 with Dr Malatack.  He wants us to see him before we have the surgery.
  After lunch we saw Dr Chidekel, our fav dr to do the bronch.  Brian, one of the resp therapists came over to us in the waiting room and started chatting, he said long time no see, I laughed and said that's a good thing  :)  He was there to help with the bronch so they took us back pretty quick.  They did see a lot of Tracheomalacia in her airway when she coughs.  That is why she is on the vent but I haven't been using it as much during the day as I used to.  She does have room in her airway to go up a little bit in size of her trach but not enough to go up another size so we have to do another custom trach.  She is in a size 5.5 which is the largest pediatric trach, the length of that is 52cm and an adult 6.0 is 70cm so they are ordering in between, a custom 60cm. She already gets a custom trach because she has a cuffed trach and thebivona flex.tend doesn't come with a cuff.
  We had a pretty good day, chuck took his work laptop and got some work done while we were there.  We met my mom and took her out to dinner so that was nice.

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