Day 5 evening

Its seems we have gone backward again…Avery’s heart rate is up still and has been all day. They aren't sure why. It hasn’t been in her normal range at all today..only briefly when she was in her deep deep sleep..all labs came back fine from this morning..so they started to give her fluid in her IV {I thought the one left wasn’t working but apparently they flushed it and it is} They are thinking she might be low on fluids and that could be why with her fever she has been running. Well not very much fluid went in bc it started leaking all over the bed so they had to take her last IV out. She was very happy that it came out. But it didn’t last very long.
Wow…could this day get any worse…Avery has had a very BAD day and also a VERY BAD night!!  Please keep the prayers coming..her fever has spiked pretty high tonight..which is kind of strange bc she is 6 days after surgery and her fever actually went away for a couple of days and it just came back today and it was higher then when she had it right after surgery. In fact it actually got to the 38.5 C, the point where they do cultures.
So of course they had to do cultures. That was rough..very rough..they tried two times in two different spots on her feet and got nothing..and then realized that she may be dehydrated some so they wanted to put an IV also since she didn’t have any left..and she was not happy with them at all. She kept telling yelling at them “no no no…” she is one strong cookie with one strong temper..the nurse made a comment that she definitely does not have low muscle tone..lol!  It is so hard to keep your calm too when your child is looking at you to help them and protect them. They are testing her blood for infection..maybe pneumonia. or an infection in her incision. or some other infection. they also took a urine sample to test for urinal infection. She did awesome peeing bed pad so we could get a sample..we thought we might have to catheter her.  Ill let you all know the results as soon as I do. Can take up to two days they said.
So they took her epidural out this morning and then gave her an oral dose of oxycodone which knocked her out right away almost. Then she woke up a little and was time for another dose and then knocked her out again. apparently the dose of the oxycodone is too much and is knocking her out..she was knocked so out much  that we couldn’t give her her valium for the muscle spasms so just a awhile ago she woke up just screaming…and couldn’t clam her down..we are thinking she was having a muscle spasm. so we had to give her a shot of morphine too along with her valium..and once again she is sleeping..So we are left finding that happy medium place..and since the epidural is out she is finally starting to really feel the pain..Poor girl! So we are going to lower her oxycodone dose in the morning bc we feel that with everything she has been through we need to give her a break and just let her rest a little and stay on top of the pain.
PT did come by for a little bit and we got her out of bed for a little bit but didn’t last very long..
The cast seems to be digging into her leg where her surgical incision is so they put a call into ortho to come and look at it…she also seems to have to much movement of her hip and don’t know if that should be happening. So ortho came by and said that we might need to cut that little bit out too but we are going to wait and see what it looks like in the morning. They added some padding to it for the time being. We are hoping the swelling will go down and then it will be fine bc when they fit her to her cast in the OR room they do it when there is no swelling but she has swelled up a lot and this is why we are having this problem.
She hasn’t eaten anything all day either..another step backwards
We took her catheter out we will see if that was a good decision or not. She hasn’t really peed a lot since… She did have a good bowel movement after we used a suppository today.

Im sorry today was a rough day on me as well..We are almost a week into this..and this stinks! Literally sucks actually! I am so drained physically and mentally and emotionally...i have minor breakdowns for no reason other then i need sleep im sure! We have such a long road of recovery ahead..What did we do???  How are we going to get through the next two months? I have four other kids that i have to take care of when i get home. and two of them are two!  and I cant help myself to think ahead and the road seems sooo long and windy and curvy. and then cant help but to think how in the world can i inflect this much pain on her again. It hurts to even think of it. this girl is in so much pain and her whole world just got turned up side down and she has no idea why. I know that we had to do this but it is really hard..REALLY really hard.. and thats all i have to say for tonight.im tired so good night!