HELLO! I made a video for all you Ava lovers! Once again she is a wild thing with NOTHING holding her back!
She is doing fabulous! Though she is still throwing up. I think this is going to take some time. We are ready to go home now. I feel comfortable with how she is doing to take her home and continue this journey. As you can see in the video she is up walking and as we can tell pain free. Or perhaps she is just used to all this pain stuff. We plugged her G tube this moring to see how her tummy tolerated it. Her total out put today was aboout 250ml's. Slowly but shirley we will get there. I'm in no hurry. I do want to get out of here. There is not much for her to do and she misses her sisters badly.
Brian decided he needed to go back to work tonight, so I'm sure I'll be up all night. She did sleep great last night. I hate that they have to get her vitals 50 bigillion times a night. Tonight I'm going to leave a note on the door that says I'm denying vitals all night long. She has to get her rest. PLUS I can get them if I'm concerned. She got a chest xray today and all looked great. HEr respitory has been runny low. 15-20 at night. This is very low for her.
The doctors think Ava needs to stay until she starts tolerating tube feeds. I on the other hand think this is going to take many weeks and NOT days. It has been 4 months since her intestines worked right....but what do I know. Tonight I'm going to speak my mind. I find it humerous that they let me take her home on TPN and a large open stomach wound but yet she has to stay until she eats.....is this right? I can call them with her progress as I have ALL along. All two and a half months of being home.
Here are some pics of Little Miss Thingy, Thing, Thing! She does have her puky moments but I'm thinking that her poor body is so used to throwing everything up it does this automatically. Perhaps tube feeds will work. I know it is all going to have to go S L O W L Y! Nothing Ava does is text book so why treat her any differect now? Her surgeon is out of town but should be back soon. I know he would let us leave. He knows she does much better at home. The other surgeon just don't get me. (I guess I can be a little vocal! I wonder why?)
As promised here she is!
Ava and I yesterday.
Waking early this morning.
Of course we had to give her a foot bath this morning. This is her favorite. Fresh coat of toe and nail polish!
"See my pretty tummy. Yes the black marks are where my Mommy and nurses monitored the redness. Good idea huh? Mom said I measured 47 cm's again today!"
"My afternoon walk. Yeah I'm real excited can you tell?"
"Yes I'm very mischievious!"
Thanks for you love and support. Ava is just really doing well. I owe all her healing to you all for sending up so many prayers to our Father!
Love and Peace to you all!