Recovery Stage 1

From HDU to Stroke Ward

On June 30, when I went in to visit Dom he looked pretty good - he seemed more alert and responsive than he had the previous few days.  When I arrived I spoke to him...asked if he missed me (he nodded his head 'yes').  I told him that I missed him and was dying for a hug!  He brought his left arm up to my right shoulder and pulled me down to him.  I cried on him while he rubbed my back.  Amazing how you don't realise how important a hug from your husband is until you can't have one whenever you want one anymore!  I quickly pulled myself together and focused my attention back on Dom and his recovery.  He was so happy to have the cerebral drainage tubes removed, he could feel them sitting on his pillow but couldn't move around to see what they were so they were a point of frustration for him.  It was such a small thing to have done, but seemed like a massive step in his recovery.

On July 1 he was assessed by the physio, Rosy, and she determined that Dom needed to sit in a chair.  As he hurt is back during the seizures he was hoisted into a reclining wheelchair that would allow him to lay back enough to take the pressure off his back.  He was very alert in the chair, but tired very quickly as he was in a position to visually take in more than he had been able to whilst lying in bed. Also, he was still in a bit of pain despite reclining the chair and this wore him out pretty quickly.  

Sitting in the wheel chair for about an hour each day became part of his routine.  Along with his neurological observations which consisted of questions like:

- What day is it today?

- What month are we in?

- What year are we in?

- Do you know where you are?

Dom explained to me a couple of weeks ago that he couldn't understand why the nurses kept asking him these questions.  At the time, he said he remembers thinking, why didn't you write the date down when I told you the last time?  And he said the "Do you know where you are?" question was so frustrating because he wanted to tell them that obviously it was a hospital and did it really matter which one...he wasn't going anywhere so he didn't need to know which hospital he was in.  He said that he remembers sometimes just pretending to be asleep and not answering the nurses when they'd come to ask their questions because he "couldn't be bothered with their stupid questions", he explained, "I knew the answers were in my head so that was enough for me".  

Dom was moved out of the High Dependency Unit and into Stroke Ward on the 2nd of July.  This was excellent news as it was another step in the right direction for his recovery.  He had a little more privacy and didn't have to be monitored as closely by the nurses. 

Dom was still unable to move the right side of his body.  He had sensation in his arm, leg, hand and foot, but no movement.  He didn't seem to be too concerned about this; just a bit pissed off that he couldn't get his arm and leg to do what he wanted them to do. I didn't question him about the movement, I just kept reassuring him that it would get better and he would be ok.  I couldn't imagine what it would be like to go to work one day and then the next thing you are aware of is being in the hospital with paralysis in the right side of your body and part of skull missing. It would be so scary and so the last thing I wanted was for Dom to worry about it.  

On July 4 Dom was visited by some staff from the Rehabilitation clinic. They did some assessments and told Dom he was now on the waiting list at Royal Park and also Sunshine Hospital.  This was great news!  However, their assessments brought to Dom's attention how much paralysis he had and exactly what sort of condition he was in.  He hadn't been sheltered from his condition, the stroke, surgery or the paralysis...but all of the time I'd been spending with him I was positive and kept reassuring him.  The rehab staff spoke to Dom during the midday rest period when visitors were asked to leave the ward.  So he was left alone to ponder their questions about transitioning home. When I returned for the afternoon visiting period he was very frustrated, angry and depressed.  The rehab staff asked him questions like "Is there anyone to care for you if you leave rehab still requiring a hoist to move from a bed to a chair?"  I was not allowing myself to dwell on what sort of movement and mobility Dom would have when he came home - we'd just been informed he was on the rehab waiting list, I'd been focused on him getting better not worrying about what he'd be able to do when he came home. These questions were a big blow to Dom's confidence and mental state - he was no longer as confident in his ability to recover as he had been prior to their visit.  

Dr Matt came in and asked Dom if he'd allow Dr Matt to video tape some neurological assessments to use in a presentation he would give to his colleagues about CVT as it is so rare he wanted to take the opportunity to present it to others in the field.  Dom was hesitant to agree - he felt like it wasn't fair that all this had happened to him and he didn't want to be videoed doing things that he couldn't do.  He nodded agreement to Dr Matt and after he left us I spoke to Dom about looking for a positive out of all this. We needed to focus on how we could make the best of the shit situation.  If a positive was that we could help educate other doctors so that they could be aware of the symptoms of this type of stroke then perhaps other young couples wouldn't have to experience what we had.  I explained to Dom how lucky we were that he had the stroke at the Flinders Street station, because this resulted in him being taken to RMH where the Neurology team were directed by Professor Davis who was familiar with CVT and the treatment of it.  We were so lucky that Dom's gastroenterologist has had other UC patients suffer CVT and he was in contact with the Neurology team treating Dom.  We were lucky this whole thing happened the way it did.  Its horrible it happened but it could have been so much worse.  That's what I keep telling Dom to this day...when it all seems to be a little too hard we always think about how much worse it all could have been.