Being out of ICU gave me greater opportunities to access therapy. On my first day on the Stroke Ward, the Occupational Therapist came in for an hour. We worked hard on improving the movement in my right arm. I went to the gym for Physiotherapy and saw the Speech Therapist about my upcoming trachy removal.
Sharon came back to visit. She is committed to living a life that is healthy for mind, body and spirit. Accordingly she turned up with a bunch of goodies – I don’t even remember what they all were honestly. What I do remember quite vividly is the hours she spent massaging my hands and arms. It felt so incredible to have my muscles loosened and to feel the soothing touch of another human being. She sat with me for hours chatting away as she always had. At times we sat in comfortable silence.
Remember how I was now in a private room with a door that closed? Steve arrived during the day with a TV, DVD player and a bag of DVDs. You beauty! I could escape into the wonderful world we know as Rom Coms and TV dramas. Ali stayed that night and it was so nice to just relax watching TV together. A normal way to spend time together that I could ‘participate’ in. We watched a double episode of the new season of The Good Wife.
I ‘talked’ Ali in to giving me a sip of water out of her water bottle. She wrote in my diary, “She was loving it. Then, with a cheeky smile admitted to me that the Speech Therapist told her having any water was dangerous and that Steve had cut her off. Good to see the real Steph is still there. She tried to convince me to give her some jelly bean. Apparently Steve had been giving her some during the day. I said she couldn’t be trusted.’
I managed my airway for 24 hours while the cuff was down on my trachy. I didn’t need any suctioning. The Trachy Team reviewed my case and it was decided that they would remove it on Monday. I must admit I was a little nervous because I didn’t want to have to have it re-inserted.
My Australia Day kicked off with a 7am enema. Very exciting! Tube feeding and lack of movement, does not lend itself to regular bowel movements. So enemas were a necessary evil. While I did not enjoy them at all, by the time I needed one I was very keen for the relief they provided
I was rarely alone. My days were busy. If I wasn’t doing some kind of therapy, I was entertained by a member of my family. Mum and Dad had been down from Brisbane since the day of my stroke, my sister Ali had been juggling her 4 young girls to be in Canberra almost full-time, my brother Pete and his wife Courtney visited from Brisbane regularly and then other friends and family visited sporadically. Then someone still stayed with me overnight- this privilege was usually shared between Steve, Ali, Mum & Dad. Lucky them! My mind was kept busy, my spirits up. I shudder to think what would have happened to my mental health had I been left alone with my thoughts for long periods of time.
You truly can find fun and happiness in most circumstances if you surround yourself with the right people.
Over the next few days the kids came to watch movies with me. This was a much easier way to spend time with them. They were still so young so trying to make conversation with a very quiet Mum was hard work. Ali and Courtney gave me a pedicure. I had my first thumb wrestle with Katie, who did not let me win.
I had a big vomit out of the blue. My PEG feeds were stopped for a couple of hours. I didn’t remind anyone to re-start them. I thought I could lose the couple of kilograms I’d put on over the past year. I had moments where I felt hopeless and scared for the future. But for the majority of the time, I was in denial. I believed I would walk out of hospital in a few months and I planned on looking fabulous! Courtney, who is definitely a follower of rules, realised my feed had been off for a long time. She asked me if she should ask a nurse to re-start it. I just kept spelling out ‘diet’. Poor Courtney was torn between her concern for the rules and my health, and wanting to respect my wishes. I can’t remember what happened after that but it made for plenty of laughs.
Dad came to visit one day. I was trying to convince him to give me some water. He reminded me that I was no longer allowed water. When I reassured him that Steve had changed his mind and was letting me have small amounts, Dad announced that he was not going to be responsible for drowning me. When Steve arrived later, Dad told him I was trying to get water. Steve told him he was giving me tiny amounts again. He then gave me a couple of swallows from a syringe. I turned to Dad, spelt out ” I win “, and started laughing hysterically. In his update email Dad wrote, “She has never lost that naughtiness that Syd and I have treasured for a lifetime.”
Courtney brought Katie up for a visit. Courtney cut the birds nests from the back of my head. I still remember her piling the knots of hair onto her hand and making a growling dog sound as she took it to the bin. Katie was eating hot chips with gravy and a Summer Roll. I was begging for just a little bit. They avoided eye contact with me because they couldn’t cope with my ‘big, begging eyes’.
In general I was more alert and in good spirits. Even when I was very tired I refused to sleep. There were always lots of laughs. Somebody wrote this in the family diary which is really sweet, “Time goes by very quickly when we are with her. It would be very easy to be with her all day.”
My Dad was about to return to Brisbane for work. That was a goodbye I was not looking forward to. Dad and I had always been very close but never openly discussed our feelings. My stroke had changed that. We were closer than ever. He had spent many hours by my bedside reading to me, playing music, chatting and we now openly said ‘I love you’ to each other.
Here are a few bits from his last update to friends from Canberra.
Greeting all from Canberra. Steph is sleeping much better in the new ward. The improved sleep is not only from the quieter environment but also the fact that her pain is under better control. In fact her pain meds are being reduced gradually.
Her jaw has loosened up quite a bit and is now opening about half way. We continue to place this terrible implement between her teeth about once every hour to force her teeth apart. It is sure a strain not only on Steph but also on the hand of the person squeezing this “Terrabyte” . Steph attends the gym twice a week and is raised on the tilt table three days a week.
The good news today is that Steph is ready to have the trachy removed and that is likely to be on Monday. Steph is a little nervous about it but it means that Steph can start to look forward to swallowing and in the not too distant future eating a little food and drink rather than having it pumped through a tube into her tummy. It also means that the speech therapists can get under way. It would be such a big thing once Steph is able to make some sounds and then move onto a process of learning to speak again.
The journey will be a long one and we are measuring in millimetres and not metres. Steph is gathering more strength as she goes and her state of mind is dramatically different from what it was weeks ago in the ICU when we were not sure our little girl would make it at all.
Steph thanks all those who are offering her their best wishes and prayers. We read the facebook and email entries to Steph on a regular basis.
Syd and John