On the Road to Recovery, there's a lot of missed sleep.
By: Maureen Clout
It's almost 3AM. I just woke up from a solid 3.5 hour sleep. I feel great. Well, relatively great that is. That was the longest sleep I've had since surgery. Tomorrow marks the 7th day.
It has been a whirlwind. One for which I have been fully and completely hyper aware off. Generally there are lost days on the road to recovery with hours sleeping off the fatigue and drugs, to be honest I had made a little deal to truly indulge in that period of time. It had been months and months of scarcely controlled pain, and I was ready for the break.
What I got was a "break" of another kind. It's a steroid high. I am taking steroids which permits healing and health in the cord itself. It can stop dangerous swelling that could paralyze me at this time. I am one of those people who, thankfully, reacts well in the clinical sense of the drug working. But I am very sensitive to the hyperactivity it brings. I could clean the whole hospital if I could walk! Sleep is a lost need, unfortunately.
In a hospital where days are long anyway, I've added a lot more waking hours. I've learned to calm and quiet my mind as much as possible. It can be difficult when faced with the challenges I have had to face this week. Being scared is real, but I can not endulge it right now; too much work ahead. It would derail me. I look into the tired eyes of my family and know I have to just keep moving. Whatever that looks like.
Today was met with many decisions, challenges, assessments and finally just plain shitty situations.
In one such situation, I had to sit on my hospital bed and allow my doctors to examine where a leak could possibly be coming from within twenty two staples, stitches and glue. With suture in hand he added a couple of non frozen stitches to the already throbbing area. He said the freezing wouldn't have been worth it, but I'm not too sure about that.
Thank goodness everyone has their own strengths. I can just get on with these things and get them done, but I really needed a hand today. Jerri assisted. Took notes so that they could be passed on into the night if necessary. This is only a small little blimp on the radar, but there were many of these today.
As Jerri handled that, Barry worked his magic on getting the movement happening fast for rehab. He has a wonderful assertive yet nice way of advocating that works well for everyone.
I wrote about the need and necessary of rehab and how I had wanted to go back to Lyndhurst. When the chips were down in the complicated puzzle of spinal cord rehabilitation my numbers fell in the urgent care area as high, which means, now! The other piece to determine was 'where' because all facilities specialize in certain areas of neuro-rehab. Lyndhurst, which I had spent time at before was familiar and I had prepared myself for going back there, but it has a lot of hard memories I would need to recover from. The team came back to me very quickly to say the one week wait time was out of the question for my best outcome. We had to go back to the drawing board.
It makes you feel as though you have some choice but quickly it became apparent that the choice was very much out of our control. We were told that Dr. Fehlings was looking at their final results of assessments and was pre approving what was okay with him for my situation and I could have input among them. Apparently this level of involvement of the neurosurgeon is not usual, in my case I feel a sense of relief. Let him have the final say, and I am sure he has the pull to get me where I need to be.
I opened my mind to new adventures. So it is the new adventures that I am dealing with now.
At 3am my most pressing yet floating thought is what does one wear to a rehab center on the first day. I'm going to be the new girl. Last time I was in scrubs and a stretcher. Tomorrow likely the stretcher will be the fixture but I maybe can get dressed. I just had a shower today for the first time since last Wednesday. I had pyjamas on in bed tonight and tomorrow I may even be able to leave here. It would be a miracle, granted. But she did say it may happen as early as tomorrow given the need for speed here. We think a day or two may be more realistic, yet I am forever hopeful.
I am full of stories of the day to day passing of the OR, ICU, recovery and step down. I could really, honestly write a book. What a fascinating time in the hospital dispite everything.
Right now I'm in a semi private room. I have been given a special order spinal gel bed. I can walk but in a very limited way. Having woken up from surgery without any movement in either foot I actually feel as though a week later I am a new person. I have to get used to the new normal, but we have to find it first. It is changing daily. It is going in the right direction which is all I could ever ask for, but what was a very fast turn around of my symptoms has slowed down and in some cases gotten slightly worse but will then improve again. So, a very fluid situation, first an hour to hour basis, is now slower to change. The fact that there is change is what we can hang onto. I have been taking a drug which is still in clinical trials to allow for that change to continue. The key is to have the corrective rehab in place as fast as a system can allow now.
One of the places that has presented itself as a possibility seems even too incredible to hope for. It is a stunning place with thought and appreciation for the patients sensory needs for rehabilitation along with many other aspects of recovery. They have huge window views along the water and scenes of the city skyline as their view from the patient's rooms. There are pools, pet therapy, meditation and so much more.
As I lie here tonight I'm left counting blessings instead of dread. I have choices, they may be few. I have hope, it may have it challenges. I have friends and family who are, and will be willing help me. Most importantly I know I have been given so much, that is a chance. I have a chance once again to make it though this challenge and fear of mine. I'm going to do it, I have a favour to ask though. For now please send some positive views that I get the rehab I need, grateful appreciation to my wonderful doctors and staff. Most of all, I know I am on shear adrenalin right now and I will run out. Boost me up when it starts to wear off, give me that pep talk, chocolate bar, smile or funny story, to keep me going. I'm going to need it.
I am picturing you all cozy in your beds maybe rolling over and getting comfy again. You all have boosted me. Knowing you're out there and reading and thinking about me and the family feel not so alone. I'm okay. I'm really going to be okay. We've got this.