I have been procrastinating over posting this. This post has no clear theme or structure. It is just bits and pieces that went on day to day and feels a little messy. I guess it reflects my reality in those early days.
On my 5th day in ICU, Steve brought the kids up to see me for the 1st time since that first morning. The nurse in charge of ICU during that shift agreed to meet with the kids before they saw me. She spent a lot of time telling them what to expect. She then brought them in to me and spent a lot of time explaining what each tube and monitor was for. I wish I could remember her name – I have no doubt that her compassion and effort that day, had a huge impact on the kids ability to cope and the level of trauma they experienced. I must have still been quite unstable because the kids were asking Steve if I was going to die. All I can remember him saying was, “Maybe God needs her to be an angel in Heaven more than we need her here”. The kids are all Christians and seemed surprisingly at ease with his answer.
When I was no longer critical, and it seemed I would live, my ICU days became about trying to establish some kind of routine. My family negotiated with ICU staff to have a family member with me 24/7. They were all proficient blink interpreters and wanted to be sure that I could communicate any needs I had. Steve, Ali and Mum covered the majority of overnight shifts. When the wards men came to position me for the night, they would set up a recliner for whoever was staying that night.
The days were then covered by my Dad and other family members who had arrived from afar. Not to mention the steady stream of friends who had started arriving. Each member of my family had a different role to play – which kept me entertained and all my needs covered.
Dad would read to me for hours at a time. Mum would provide the comfort that only a Mum can. Ali always arrived with a supply of romantic comedy DVDs. Courtney came armed with nail polish and massage oil. Pete kept me entertained with his rather twisted sense of humor. Damo didn’t quite master the blinking thing as quickly as others, so it was entertaining enough for both of us as he tried to interpret what I was ‘saying’. Then of course there was Steve. When I was feeling miserable, I wanted him. He of course had the added stress of having to negotiate with my medical team.
My dear friends Kel and Donnie flew down as soon as they heard the news. Kel was in the middle of a course of chemo, but she didn’t care. A friend was in trouble and she needed to be there. Kel was never crash hot on the blinking thing, so she chatted and I listened. Donnie and I played black jack – and he always let me win.
Bish and Junko were not far behind. Bish is like a brother to Steve, so his arrival was a great comfort. Bish has a military background and has retained much of the military discipline in his life. His advice to Steve was no matter how miserable he was, he needed to get up each morning, shower, shave and dress. He thought this would not only set a good precedent for the kids, but also keep Steve from falling in a rutt. As it turns out, this piece of advice helped Steve get out of bed on many occasions.
I was completely paralysed so at risk of pressure sores. I had to be turned every 3 hours, between my back and each side. I can’t explain how traumatic this was at first. It required 3 people – someone to hold and support my neck and head, someone to hold my trachy and someone to roll my body. The process would normally cause some movement and irritation to my trachy leading to a coughing fit and a feeling of choking. Boy how I looked forward to it! I really have no words to express quite how awful the whole ordeal was. I think the worst part was the feeling of not being able to breathe and the fear around how long it might last. Most of the staff were awesome and would talk to me the whole time. Occasionally nurses would forget that I was completely aware of what was happening, and talk as if I wasn’t there.
My trachy had to be suctioned every couple of hours. A small tube is passed into the trachy to suck out any mucus that had built up. Mucus could block my airway and was also an infection risk. As the suctioning tube passed through the trachy tube and touched my trachea, it would cause irritation and a cough reflex. The process made an awful sound and temporarily stopped me being able to breathe. It was extremely unpleasant for me and any poor unsuspecting visitors.
In the first couple of weeks I had horrendous back pain. I’m not sure whether it was from my bike crash or my body adapting to a lack of movement. Either way my coughing fits were really not helping. If it settled down, suctioning my trachy was sure to set it off. I began to really dread being suctioned for the pain it caused in my back.
I had several blood tests a day. My medications were ground up and mixed with saline. They were then put through my nasogastric tube. For several hours a day, a food replacement was slowly dripped through my nasogastric tube. Every few days I had to have a chest X-ray. The portable machine was brought around ICU very early in the mornings. They would have to raise the head of my bed to get my chest a little upright. Then they would need to slip a board in behind my back. I cant remember what made it so awful but I remember really dreading it.
During the day, I would be reviewed by the medical team. There were lots of questions along the lines of: shrug your shoulders, squeeze my hand, wriggle your toes etc. I found it very frustrating. I knew they had to do it but it felt like a continual slap in the face. I really wanted to just yell, still nothing works.
I’ve mentioned that my jaw was locked tight. As the first couple of weeks passed, I began to yawn. It was completely involuntary – I had no control. It was the only time my jaw would open, and it would open wide! Exciting, you say. The bad news was, I had no control over my tongue. So as I yawned, my tongue would flop around. Then as I finished yawning, my jaw would close again, irrespective of my tongue position. As I sat with my tongue stuck. between my teeth, all I could do was blink furiously until someone realised I wanted to spell. Then I would have to spell tongue, 1 letter at a time, all the while in pain. The nurses would use all sorts of things to try and wedge my mouth open, giving my tongue a little freedom to flop out further. After a few days trial and error, we realised that trying to open my jaw was counter-productive and they were best trying to push my tongue back in between my teeth. How I didn’t bite my tongue off, I’ll never know.
My family soon worked out they needed to watch out for my yawns (remembering that I had no way of drawing attention). Ali was quite disturbed by this whole thing and took her yawn-watch job very seriously. You probably know that our jaw muscles are the strongest in our body so best to stay away. I went to yawn and as my mouth began to shut, she could see that my tongue was sticking out. So what did she do – sticks her finger in. At the same time a nearby doctor was yelling “don’t put your finger in there”. Too late. Ali was now screaming “knock her out” and …. That’s the last I remember. So the good news is I got some good drugs and kept my tongue, and Ali managed to keep her finger.
10 thoughts on “Groundhog Day”
You are an amazing woman, Steph. And an inspiration. xxoo
Steph your blog is like a good book – I can’t wait for the next chapter even thought I know it sometimes makes me cry. Often it makes me smile at the wonderful people you have in your life and today I even laughed.. sorry Ali but i was reading and just knew what was going to happen! (Such a natural instinct I guess.) Thanks for the giggle, keep up the writing and I look forward to the next chapter. Rani
You are amazing!!!
Oh gosh Steph, I don’t know whether to laugh or cry!! If this was your intention, well done. Just read it out to Steve and had to stop a few times to let the tears fall, yet both of us in fits of laughter at your incredible sense of humour…how do you do it??? Love you, miss you. xx
This is so well written Steph, you have the ability to draw the reader in. I’m learning so much from your blog and I look forward to the next post.
Hey- just wanted to let you know that many of us would have been there beside you in hospital for you if we could. We also would have flown to your side- however a hospital room is only so big. In times like that you can only have the dearest by your side. I have learnt through the experience with my dad that everyone wants to be there to do something to help to express their love and personal distress but it ends up causing those who need to be there even more distress managing the love and the communication.
I love your posts Steph and miss Ali so much. She is an amazing person as are you! Keep writing, we are all learning so much
Dear Steph, I have started to read your blog today and even though we knew what you had gone through by keeping in touch with your Mum & Dad it must have been so hard for you and everyone. Like one of your friends said you don’t know whether to laugh or cry but I will continue to keep reading your story. As you may have heard from your Mum we have also had a tragedy in our family lately with Adam and Katherine loosing their baby girl Hayley on 3rd December after 14 months of hospitalization and operations but in the end her little body decided it had had enough. Thanks for your Christmas card, we couldn’t bring ourselves to write out cards this year as we were away with Adam and Katherine caring for little 4 year old Aaron until we came back home just in time for Christmas. As they say time heals. Lots of Love Helen & John
Hi Helen so sorry to hear of the loss of the baby such a tragedy for your family. We are heading down to Ali’s to help Syd & John look after the girls. We are trying to arrange to meet friends in Bulli at the same time the Frews catch up with you & meet for dinner one night. We caught up with Steph briefly when she was up & noticed her speech had improved. It was lovely to see her for a hug & some cheek.