Day 2

Whew!! What.a.day…what.a.day!!!
We didn’t get much sleep last night.or I should say I didn’t...Avery woke up a few times crying and needed an extra bolt from her epidural.(another sign that we should of left the epidural in for one more night) Just from the nurse moving her a little bit to reposition her.
Avery got a sponge bath this morning..and we washed up her hair…

Avery’s attending dr that has been assisting Dr. Kim

Her dr came by this morning and I missed him…but he was very adamant about getting that epidural out today. His thoughts are the quicker the epidural comes out the quicker we can get her up and moving around and sooner to go home..which I get..but come one.day 2 after a major surgery..really???  What would one more day hurt??? I should of fought way harder on that one and the epidural SHOULD NOT of came out today!!!!!!!!!!!!!! I fought to keep it in while we did cast change and the dr I guess wasn’t happy about that at all..so then that’s when pain management came back and said they were going to take the epidural out when we put the back of her cast on…Doing the whole cast thing was VERY traumatic to her..and very painful…moving around her caused a lot of muscle spasms too..so his idea instead of the epidural was to start an IV of morphine. and to have a continuous small dose of morphine and have it set up to give her bolts every ten minutes if we needed too..the problem with that is the nurses are too busy and cant keep coming to give her a bolt of her morphine every ten minutes. So we are now tryin to get it changed but still working on it..but we are trying to get it changed to higher dose of continuous morphine and just having like one bolt an hour if needed..the thinking is if you need a lot of bolts per hour then you probably need to go up on your morphine bc what you are giving is not taking care of the problem. Pretty much all day she has been crying if she is awake..and if she is sleeping waking up crying..
She has been having muscle spasms too and the nurse figured she wouldn’t give her her valium at the time she needed it bc she was sleeping…BAD IDEA!!!!!!!!!!!! Wake her up and give her her medicine..bc it turned into one BIG nightmare!!! Avery woke up just screaming..she was having muscle spasms..her pain medicine wasn’t controlling her pain…and all I could do was cry with her..
We did have a nice nap together during the afternoon..

We tried to skype with the girls but Avery wasn’t really having it…

She keeps telling me bye-bye…home
We have moved twice today..once just into another room on ICU and then tonight in the mist of all her crying/pain they decided to move us to another level…ICP (intermediate care program) Which is a step down from ICU but yet she can still be here with her sleep apnea..bc she cant be on a regular floor bc of her sleep apnea..and having to be a sleep machine at night ..But it has turned out to be better for her bc the doctors seen me just crying with her when we got here so they get that we HAVE to get this pain under control and they are the ones that are being aggressive with it.and her nurse for the night…we also have a bathroom in our room which is nice bc then I don’t have to leave to go to the bathroom..Ill take pictures of it tomorrow but at night we have a great view of the city building.s..but I have a feeling I am also right next to the helicopter landing which = loud noises= no sleep.

After the epidural came out she was/is very irritable..doesn’t want anyone coming near her..not even touching her to listen to her..or take her temp…very odd wasn’t like that yesterday..
Still has her fever..low grade fever..stays below the 38.5 mark
Still has not went number two yet..I think that is where we are going to run into major complications. Bc she has so many issues with constipation already bc of her Hirschsprungs disease and she cant push or sit on a toilet..so we started the colac..and miralax twice a day..before it was just once a day…and the nurse gave her a suppository this afternoon..
We took the catheter out tonight…she was happy to get that out..and has already gone that first initial pee after you take it out..bc as many of you know it is VERY hard to go pee after you take the catheter out..at least it is for me after my c-sections..I have a super hard time going…too much information probably… 
We stopped the IV fluids she is drinking pretty well..she did eat some lunch a little (while she had the epidural in) a little bit of chicken noodle soup…but at supper time she wouldn’t eat nothing..zip.nada..probably in too much pain!!!
I didn’t end up getting lunch until 230 and supper until 1000..and now I'm hopefully going to get some sleep tonight..but I have a feeling its going to be a long night with Avery.
I miss my other kids like crazy! Its really hard being away from them all.but Skype has really helped and I am really glad that I set that up before I left.