July 20, 2012

Help fill a dream room

There is 10 rooms at Jeence place, all with different names. The names are all of big donors who helped fund Jeence place. Today I took the time to read what room we are in Help Fill A Dream Foundation, coincidence?
I faxed off my application yesterday and they called back later that day because they couldn't read the fax, so today we scanned it and emailed it to them. Hopefully since they called back so quickly they will get back to us quickly if they can or cant help us.
I love the hospital and the location of Jeneece place, the only thing I don't like is that the hospital always does Hannah's care with out me and calls to tell me not to come because she just fell a sleep. Ok, I get calling me to tell me she just fell asleep she needs her sleep. However if you never let me come when she is sleeping and Hailey is on a different schedule I will NEVER get to see my little Hannah!! The fact they don't wait for me to do her care drives me mental! If i'm not there before 10-10:30 they do it with out me. I even wrote a big sign saying



" Mom wants to do:

- Hannah's Bath
- Trach Ties   
-Trach Change


EVERY DAY!

here's how to reach her.."

There's no way the miss that sign and her trach ties and bath doesn't need to be done at 10:30! it can be done later in the day there is no reason they can't wait for me to come in. I do try and making it before 10:30 but there's some days  that it just isn't possible. Either Hailey was up all night or she was WAY to cranky to even change her diaper never mind get her ready to for the hospital or there's some days we are all ready to go and then Hailey NEEDS a nap. I can't control this, they should work with me.
Today the nurse called my cell phone to say were just going to give Hannah a bath we will wait to do trach ties. I said ok I tried to make it in but Hailey was soo  cranky I just put her down for a nap.. Not even 5 mins later the other nurse calls THE ROOM to tell me Hannah is going to go down for a nap and to call before we come. Well thanks for a waking Hailey up.

On a side note. Hannah is back on a little bit of oxygen. They think she aspirated when she was out playing with physio. Looks like we wont be home till at least September. The hospital isn't even getting together for a big meeting until august 17!

Hospital day 462

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