Day 4

Soooo today I thought was going to be a good day..bc when we woke up the nurse told me that overnight her heart rate was really low so they could tell she was comfortable and not in pain…but then she also comes in and with a dose of one of her medicines and I ask how the night went alternating them..and she says OH well he didn’t give them to her last night bc she was sleeping so good…he didn’t want to wake her…soooo guess what we were doing all morning…playing catch up!! she was very itchy and cranky..and just really crabby..so then she got another dose of tortol via IV too..and then once she got the Benadryl after lunch time..(which no she did not eat lunch yet) she was out and has been since..and its 430…she is way knocked out though.very unresponsive .the dr just came in and said maybe too much..her pupils are really small..she says good thing we are in hospital so they can monitor her..bc she is at a level that would not be safe at home..thanks that makes me feel very uncomfortable…she goes on talking about her very possibly effecting her breathing…and so on..and I am thinking ok..are you serious??  and then not even five minutes later her breathing stats dropped down to 5 many times..so pretty soon you see two doctors and a nurse coming in the room to check her stats manually instead of the machine..freaked me out..but many hours later she finally came to..we just didn’t give her anything until she came too again..and then gave her her valium..and Tylenol and then waited a few hours and gave her her oxycodone.
Also she says that they got off the phone with ortho dr/surgeon and they were not comfortable with giving tortol to her and wanted it stopped right away..bc it slows down bone recovery and new growth..and not to give ibuprofen either..they were talking about stopping the tortol and starting ibuprofen on there rounds this morning.…are you serious?? we are on a roll here!! 
So the plan of action is to stop the tortol and to just give her oxycodone and valium..and Tylenol for pain…and they are decreasing her oxycodone level again back down to 2.5mg bc they think that is knocking her out too..and giving her something else for the itchies besides Benadryl..bc Benadryl can make you sleepy too…and mixed with her narcotics might be just enough to knock her out..Well now I know why her heart rate is soo low.and her breathing too..bc she was knocked out!
She is still not eating..we tried pediasure..no go…she says ewie..we tried ice cream shake..she says ewie..we tried everything you can think of.she has zero interest in food!!  she will drink but not a whole lot..this morning her pee was really dark..and very little..and if she is so knocked out that she isn't even drinking they made a comment about putting her back on IV fluids bc she could be behind..***She did eat a little bit of spaghettio's for supper along with some yogurt…***
Its really hard to see us leaving on Monday right now..but the floor dr said oh yes..she can see it..its all about tweaking it…well the girl hasn’t even been out of bed..we were going to get her up into the chair today…and we got her up once to go to the bathroom and she was screaming/crying…so we put her back in bed..we cant even move her with out her screaming..how can we possibly go home…she was going to get a bath today too but nope she is too out for that too…we need to check her cast for sores…
Her fever is all gone and has been all day today.
They will need to check her incisions before we leave too and make sure that there are no infections there..and they still haven't did that either..
WE did just get her out of bed to go potty and had some more poo action so that is really great news!!!
She has one eye that is pretty pink on the inside of her eye but dr said it doesn’t look like pink eye so that is good..just watching for drainage and if she itches it..
We had some more visitors today..Yay for visitors!!! I met this mom who also has a child with ds on Monday in the ortho clinic while I was there for the pre-op..she was there bc one of her other daughters had broken her arm..but anyways…we connected via fb and was going to be at children’s hospital today so she stopped up and visited us for awhile….Was that ever nice….to actually just talk to someone for awhile.We actually have a lot in common which is awesome too...she is actually the one that turned my name into that organization Heartbeats for Down Syndrome that gave us the goodie bag..I just LOVE her for that!!!
Hopefully tomorrow is a great day for Avery and me