Dana has a really uncomfortable night last night with spasms in her legs lasting around four hours on and off. The spasms really hit hard and she screams in pain. Deep breathing eases the pain a bit and Dana refuses to take pain relief, but after a few hours I call the nurse to give her some pain relief which by this point was around 11pm. Dana is crying which is a mixture of pain, the effects of surgery and needing to sleep. She settles down around midnight although she is talking throughout the night calling my name and asking for help, which when I look up she is sleeping. This coupled with the nurses coming in every few hours to take Dana's stats makes for a sleepless night.
I must of drifted off to sleep as two figures appeared beside Dana's bed which made me jump. Two of Dr Dobbs' team came and reviewed Dana at 6am. Not a cute doctor in sight this time. I soon woke up and started talking with the doctors who are happy to discharge Dana today and also answer my queries, which is mainly to do with the dressings as one has leaked and was advised to just put another dressing on top. This is not pretty however is normal, as is the tenderness Dana is feeling especially in the heel and of course the spasms which is very common after this surgery. The main concern for Dana is the IV line which is also being removed today. I wasn't prepared just how much more pain Dana would be in this time round, mainly to do with the spasms and also how dependant she has become again. We really are back to the beginning, which is upsetting, yet when I think of the long term benefits this is really just a minor hiccup. It is hard on a daily basis.
The doctor did make me laugh when I asked if she was able to remove the dressing from her SDR operation. She said everyone in the OR had it in their minds that Dana was not to leave the OR until this dressing was taken off. She said it was like a cross check by a whole number of people, every one was asking, making sure the dressing had been removed. The scar looks lovely and straight as if Dr Park had used a ruler and so small.
When the doctors had left, all I wanted to do is get back into bed, believe me this was not going to happen. I ordered breakfast and while we were waiting give Dana a freshen up before Blaire arrived. In a space of 45 mins we had a nurse, nurse practitioner, breakfast and Blaire arrive one after the other. Fortunately Dana was eating some dry cornflakes when Blaire showed up which didn't stop Blaire just getting on with showing the stretches which are important to do today. Dana was still having the odd spasms yet seemed to cope with it better during the day than at night. Each time Blaire attempted to touch Dana, Dana would clam up, this is no good for stretching nor for the spasms. We encourage yet again deep breathing, Dana pants which makes us laugh. Dana is not impressed but I feel better. Dana makes steady movements as Blaire shows us what to do and then we repeat. After an hour Blaire goes and now I can finally eat my breakfast, as her physio session with Mike is at 11am.
Dana catches up with her friends on Facebook while I pop down to pharmacy and pick up the medication. While I'm gone I hear there was a dog visitor which freaked her out. Poor animals. Mike also arrives and brings with him a bike. The look on Dana's face is horror. Yet she does really well and manages to ride for half an hour around the hospital twice. I'm tiring just walking, hate to think how Dana feels. We head back to the room and Mike goes through showing how to transfer Dana. This is familiar as we are back where we were post SDR. When Mike leaves Dana officially gets discharged and with a bag full of medication head to the cafeteria for some lunch.
Some butterflies are being released on the roof garden so we head up to the 8th floor and take a look. Dana's not impressed at all and just wants to get back to the hotel, while Ollie is so excited and manages to hold a few on his finger. We call for the usual assessable taxi and are soon walking through the hotel lobby. It feels so good to be back and the thought of no further operation just lots of hard work.
I give Dana some pain relief which helps and I end up falling asleep. I never fall asleep in the afternoons yet my body had other idea. I even miss a telephone call and notice the light on the answer phone flash. I do a few stretches with Dana to keep the momentum going as it is so important to keep the legs moving and also build up the strength in the quads. It takes all of Dana's strength to complete the set and does really well.
I feel the focus has moved away from the SDR operation and very much now on post op hamstrings and heel cords which I suppose all equals to strengthening her legs to enable function. It is sometimes quite overwhelming for us as parents to keep up with all the information given to us. We want to do the right thing for our children, encouraging and motivating them, but inside you have run out of steam, yet somehow the energy comes back at just the right moment. It is comforting knowing other families are going through the same thing, yet I do find myself in my own little bubble whereby my focus is purely Dana and I really do not want to know about anything else.
Dana is back with Mike tomorrow at 11am so at least she is able to have a restful morning. Hoping the pain is that much better and the splints have finally arrived.
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