So we arrived in st Louis and met Dr Park on Monday morning he was lovely, he siad that gracie was a good candidate for SDR and he can def see her being able to walk with sticks or crutches and there is a chance with work that she could walk independantly, this is AMAZING and we really hope this will be the case. Her operation is tomorow Tuesday and we are first on the list.
Tuesday we arrive at the hospital at 5.30 am with a very tired gracie and get shown to our room soon it is time for gracie to get weighed and changed ready for her surgery she is being very brave, a lot braver than me and daddy. soon it is time for her to go down for the op so we walk down with her to theatre and she goes in happy as anything, while me and adam are in bits outside the theatre we know we are doing the right thing for her but its still very scary,
we go back to our waiting room and wait for the first phone call to say she is all ready to go, this comes about an hour later and the nurse tell us she is ok and Dr Park is about to start she also tells us she will not ring for another hour and we should go and get breakfast so we go downstairs for a bit.
The next phonecall came and said that Dr park was just starting on the second side of her spine and all was good so far thank goodness, the next hour goes really slowly and feels like forever but the phonecall eventually comes to say she is done and is ok and they will call when we can go through to recovery to see her.
we wait and wait and wait but no call comes we are both getting very anxiuos and want to see her eventually the nurse calls through to say she is ready, when we see her gracie looks very puffy and pale and is hooked up to monitors and machines the nurse says they had trouble waking her and when they try to get her to move her legs she wont which is very concerning. we follow her up to PICU where she will spend the night all i can think of is if her legs are damaged im so worried.
Eventually after a while and reducing her meds we get gracie to move her legs thank goodness!!!!
she stays in picu for the night she is a bit distressed and the medication is making her very tetchy and grumpy when she wakes which is hard but she sleeps for the most part and all her signs are good.
Dr Park comes for a visit this afternoon , i asked how many nerves he had to cut he replied "we left enough!!!!! " so im guessing she was very very spastic in her nerves..
Wednesday post op day 1
we move to the 12th floor of the hospital into our room which is nice and big and meet gracies nurses, Grace is very unsettled and keeps waking up and asking for her brothers and sister and asking "whats Happened to me" this is hard as she doesnt understand whats going on she is like this all day and night on and off not much sleep for anybody this night but hopefully tomorow will be better.
Post Op day 2 Thursday grace is much better today in herself her fentynal is being stopped today and the difference is amazing in her she calms right down and even start to move her arms and legs aounf her right arm looks amazing already she could not put it straight before the op and is noe led with both her arms above her head her toes look flat which they never have befor and her legs look lovely and relaxed, Gracie spends the day watching tv and we read books, tomorow she can get our of bed for the first time so we are looking forward to seeing what will happen then . we also had a visit from Sharon Callum who had the surgery 3 weeks ago he brought Gracie a get well Balloon which was lovely.
Post 0p day 3 Friday
we had therapy this morning at which was just getting gracie out of bed into her chair and going for a walk for half an hour she loved being out of bed and we went up to the roof garden in the hospital where grace threw some dimes in the fountain and made a wish, wondered what she wished for? we then went for a short trip to the playroom where grace played with the trains, she was very wobbly and her head was nodding the whole time but this is normal and she should regain this strength very soon.
after lunch it was time for more therapy we transfered her to her wheelchair which is a bit awkward but not that bad as gracie is small this must be really hard to do when you have an older child that has has the surgery.
we met Michael the pt therapist and he took us down to the therapy room, i know now why some people have called him mad michael he is crazy!!!!! but in a good way, we did some streches and tried to sit to stand but gracie is so weak at the moment although she did put some effort into her standing and did well me and adam both had a few tears watching her be able to move with no tightness is amazing she didnt moan once either she is a very brave little girl.
