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Sunday, October 23, 2011

Hannah long overdue update :)

Hannah today in her sparkly outfit today
  we have had a pretty good summer, chuck and I got to go on a vacation starting Labor Day night, we went to Williamsburg til friday and then went to see our middle daughter Jenn, her husband Bob and our beautiful grandson Jonas til Sunday...Can't believe Jonas will be a year old on Nov 5!  He is growing so fast and doing really well..we really miss them.
  Hannah has had a few colds and  fevers off and on for a while, nothing major though.    Her bloodwork has been doing pretty good.
  I have to straight cath Hannah's urine every 4 hours during the day and overnight the nurses but in a cathter, tape it to her leg and let the urine run into a diaper.  She cringes almost every time we cath her and especially when we take the catheter out...they think she could be having bladder spasms..we get a lot of urine everytime and it gets to be a pain every 4 hours especially trying to find someplace to cath her in public.  We finally are going to do some testing from urology this tues (10/25) and see a urologist after, not our regular one, he isn't available that day.  Hopefully we can get some anwers.  I have been praying that they bring up having a mitrofanoff done, if they don't I am...something has to be done to make it easier.
  She is also going to see the pulmonologist and have a bronch done it clinic...her cough sounds like her tracheomalacia is worse.  He is hoping he can upsize her trach and see if that helps.  The only problem is I am not sure if we can get a custom bivona flex tend with a foam cuff in a size 6.0.  I haven't been using her vent a lot during the day so I am wondering if that's why.
  That is going to be long day so chuck took the day off since it might be dark going home.
  Pray for us for answers on tuesday.  I will try to remember to update when we get home.  Thanks for the continuing prayers.


Life as a Convert (Khourt) said...

Good luck tomorrow.. I think I know what sorts of testing she will be having done because Losh has bladder spasms and is on medication plus I&O caths to help.. The meds dont really help. His bladder is just so tiny. There has been talk of a mitrofanoff stoma but its only been talk. Personally I think it would be a lot easier to deal with and more comfortable for him, but they are giving it a few more years to decide. Its tought when he is especially uncomfortable. He will just wiggle and squirm in his chair.

joan's blessings said...

I would go ahead and do it, would make life a lot easier for both of you...I have been doing a lot of research on it...very interesting