Our plan for the day was to get her pain under control and stay on top of it…to try to get her up and out of bed..and to get her to eat..and to get a little poo action….
She had a lady from child life specialist come by and try to cheer her up by making a necklace with her..she was kind of into it but it was before things started to go sour.
Her new necklace..
So for breakfast she did eat an applesauce. So we are making small steps…But then she wouldn’t eat lunch..but she did eat a little bit of yogurt at around 3:00. She also had a few bites of ck noodle soup for supper and a couple more bites of applesauce at 9:00..
She also got another suppository and we got some poo action!!! Wooohoooo!!! Never thought I would be so happy to see that!! Its all in the little things…right;) Small steps
We had to monkey with the cast again today..there was a spot on the back and a spot right on the inside of her leg that was digging into her leg..so we had to lift her up and remove the back piece and then ace bandage her to the top of the cast. and then the cast guy took the bottom cast and sawed away some of the parts that were digging into her..and added extra padding and then came back and we had to lift her up again and place it under her and then strap her back into it.
She had to have an x-ray to see if after all the moving around from the cast changes the hip is still in the right place…it better be is all I got to say about that;) but we wont know until tomorrow..The neat thing was that they came to our room..we didn’t even have to move Avery..
So know for her pain…did they stay on top of her pain and keep it controlled??? NO!!!! It has been a rough day!!! Really rough….This morning they switched her morphine IV over to oral oxycodone. Her dose was 2.5 mg. They were thinking that it would control her pain better. But the key is if the oxycodone will stay down since she isn't eating and it can tend to upset the stomach. So for the first dose we left her hooked up to the morphine for 30 minutes after so that way if she needed an extra boost until it kicked in she could get it..or if it came back up..it never came back up so they removed the morphine IV. And was just giving her oxycodone and valium for the pain. But then came the cast change and caused a lot of pain…so we gave her 1mg of morphine via IV again to keep her pain under control…Well it didn’t work..it all just kind of went down hill after that..we were starting to go down hill before that but we just went faster down hill..so to say. she was crying and she was inconsolable..last time watching George usually quieted her down but not this time..nothing worked. She didn’t want anyone to touch her..she cried if we moved her pillow..we cried if we moved her at all..no smiles..very sober..We had got her up to go to the bathroom (bc that is what the dr wanted to get her out of bed earlier) instead of going on the bed pan and she just started screaming bloody murder basically…so we put her back in bed. and gave her dose of oxycodone..and then after awhile she fell asleep and then she would have spouts where she woke up and started crying and her heart rate sky rocketed and looked in so much pain..and kept saying owie..so I asked them about it and then they said she clearly is not content..the dr on the floor seen that..so we put a call into the pain management team..and the nurse was talking to them on the phone while Avery is in the background crying..and she gets off the phone and tells me that they don’t want to change anything..they want to leave everything as is…IT CLEARLY IS NOT WORKING THE WAY THINGS ARE GOING RIGHT NOW!!!!! and so she says let me go talk to the drs on the floor and see what they say..and so the dr comes in and says lets give it 10-15 minutes and see if she calms down bc we just gave her a dose of valium.. (which we didn’t change anything doses or anything so why would it change anything now) and if it still doesn’t take care of her pain we will call into the pain management team again. I kind of lost it!! I was sooo mad!!!!!!no I was IRATE!!!! and so was the nurse bc she had seen what I had all day too… so she was behind me too. I have been going on no sleep and I have seen her suffer for the last 24 hours since the epidural came out with no relief from pain.I'm pretty sure I got my point across…bc with in 20 minutes they had the pain management team in my room instead of talking to them over the phone! The one thing that ticks me off is Dr. Kim her ortho surgeon dr. was so adamant about taking that stupid epidural out so fast…and then they cant even control her pain.!!!!!!! and is he sitting in the room with her listening to her scream bc she is in pain????? NO!!! IS he even in sight???? NO!!!! Has he checked on her since they have taken it out???? NO!!!!! He isn't even in the same hospital..he took of to MN for a conference!!
BUT we have a new plan for her pain..so hopefully this one will work…They upped her oxycodone amount to 3 mg. her valium is the same amount. they gave her 1 mg of morphine for instant relief. and it is on standby in case we need it again. and the oxycodone and valium are to be given every two hours rotating between the two..so she would get oxycodone then she would get valium two hours later then oxycodone..and so on…They also started her on tortol. I guess it is suppose to be a great medicine to relive bone pain with out making you sleepy..UMMMM HELLO????? WHY wasn’t this prescribed earlier then this afternoon??? that is given every 6 hours via IV…So we will see I guess..right now she is sleeping but I think she needs a little bit of good sleep with out pain..bc she is sleeping and she isn't waking up with her heart beat sky rocketing and her spurts of crying then falling back to sleep. She slept for a good long period after starting this..and then she woke up a bit and played on a magna doodle…and ate a few bites..and played on her iPad for a little bit..but then she got the case of the itchies..really bad….so we had to give her some Benadryl….so hopefully that will take care of the them..
Also so we just got everything onto a two hour schedule..and then the night nurse comes in and i get back from supper at 830..and ask if he gave her her valium that was suppose to be given at 730...and he says no bc its every 6 hours..and i say no it s every four hours..so he looks in the computer and i guess there was a write up for one for every six hours (an iv one) and one written for every 4 hrs (an oral one) and so now we are off schedule again..and so we have to push the oxycodone off one hour to get back on schedule..can i just scream now or what??!! AAAAAAHHHHHHHHHH!!!!!!!!!!!
Occasionally when she was crying today she would put her hand on head to cover her eyes..she fell asleep with it over them so I had to take a picture..
I had been leaving while she was sleeping to get something to eat..but at lunch time I came back to her in her room just crying…that was hard..it made me mad..so I don’t want to leave her now..
We took one IV out of her hand today too..she was not happy about that either..she moved her hand a little too much and the cotton ball slipped off and we had quite the fountain of blood flowing from her.'Bc it hadn't clogged up yet.
We had visitors today..Lexi..a friend I have met via fb and I have also followed her blog for awhile now..she also has a little girl with ds..her name is Abby.. I thought for sure that seeing Abby would make Avery happy but nope it didn’t do the trick..she's sleeping in the picture but she wasn’t before that..she was crying..
Isn't she soo adorable??!!!!!
It sounds like if everything goes good from her on out we will get out of here on Sunday or Monday morning..so our angel flight isn't scheduled until Thursday so that is a lot of nights here in a motel..so I tried calling them to see if they could move our flight up..and they couldn’t so I called another organization that I dealt with first before angel flight but the reason why I went with angel flight is bc there plane was grounded. so they have been just buying there families commercial tickets instead until they get there plane up and working..the organization is Children’s Flight of Hope…so anyways after talking to the mission organizer there they have agreed to buy us two tickets on Monday top fly back home on..so we will fly on big airplanes..it might be a little bit more harder BUT it will get us home a lot sooner so we will just have to work with it..when we arrive to the airport they are going to have some mass medical team outside helping us to get through security and to the gate and then they will help us in the next airport..we only have one lay over..in Washington D.C. and it isnt very long..so that is good and we will leave 5pm on Monday and get home at 930pm..so I think it will all be ok..they will have the wheelchair delivered at home again..and we will just use the wheelchair at the airport.
Our new room:
The view from our room during the day..
I myself am very very tired..and just really drained emotionally and physically and mentally. I am soo behind on sleep its ridiculous. I am starting to feel a cold coming on…my head feels a little full..I have been taking lots of vitamin c in hopes that it will stay away..I am really missing my husband and my kiddos..
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