So this is where I get all Patch Adams on you….
We checked back into the Plaza (Alberta Childrens Hospital) on Thursday Sept 29. In style of course (via ambulance as Lewiston was puking, choking and turning blue) We got in and he seemed settled so of course I was pushing to get home, so we went home thinking everything had settled out. Four hours later the puking continued and so did the choking and struggling for air. We literally had to blow on his face to get him to take a breath. Lewiston looked scared, so we raced back to emerge – this time it was packed. It was like we were heading into a night club, a line up out the door and standing room only…of course we got VIP access and straight into a room to see the Doc. The perks of being palliative and having the doctor personally let them know you are on your way in.
This time I refused to leave until we had the puking and choking under control. I requested a bed on unit 3 because where else would I want to be. We had already been there twice and I knew that some of the nurses were comfortable with him and new what was up. At 1:30 in the morning we finally got up there – my bed was already made by the nurse and she encouraged me to get some sleep. We had an okay night. The next day was pretty rough…but we had a great nurse named Jordyn who saw us through it and did it with grace, compassion and a smile on her face. She moved with a sense of urgency and went above and beyond. I like people who don’t waste space, the move with purpose and are on the ball. I do not have patience any more for idiots. We seemed to have things settled even the puking, or so I thought. Literally 5 minutes after the dietician and I met and thought we had the feeding issues all figured out it all started up again. That Friday night was probably the scariest night of my life. Lewiston kept choking, puking and needing suctioning so he could breath. The night nurse did not move with the same sense of urgency and was just super green. It was rough to say the least. I finally marched out to the nursing station and demanded more help. The charged nurse didn’t take it that seriously until I asked them to page the palliative care doctor as I thought this was Lewiston’s last night. He was struggling for air, non responsive and eyes were rolling into the back of his head. All of which I have been told are signs that might happen when Lewiston is close to death. She didn’t jump to the pump until choice words that start with a very LOUD F sharp were used.
Ronnie was away in Vancouver, so I called one of my best friends to come and be with me at one in the morning She raced over and started praying – praying when I didn’t have the words or the strength to do so. I was beyond exhausted and totally not rational. Marie my bestie who came to sit with me said she had never heard me drop so many LOUD F sharps before….
Anyway after a couple of tests the team deemed him not dying just struggling for air….oh phew so much better. The next couple of days were touch and go, but he seemed to perk up. We got him on oxygen permanently and that made a big difference…..all this today it was a rough few days, lots of ups and downs, lots of meetings with doctors, lots of crazy languages used.
Every morning the doctor round. It is pretty intense as it is a teaching hospital. So usually we have 8-12 different doctors and nurses in the room. The residents and med students take it pretty seriously as they are trying to prove to the rest of the world that they understand medicaly what is going on and try to to make the rest of us feel like idiots because we didn’t go to school for another 13 years…..
When they “round” it usually starts off a little something like this….”we have a 4 month old male…” like really people. No hey how was your night, got any good plans for later today, anything new….nothing just straight to business. I couldn’t take it a second longer and told the doctors that if we are gonna do this every day then we are gonna have some fun. I mean for crying out loud have they never seen Patch Adams….isnt laughter the best medicine. I needed some laughter. Our days are long and draining and sometimes there is little relief. So i started reading to them out of my favourite children book. If you don’t own this book, buy it NOW. I read it just to lift my own spirits.
The day the Crayons Quit.
I joked around for a week with them about a dance party. As every morning we have a dance party with Lewiston. We stretch, we move but most importantly we have some fun and dance. Ellen does it and if Ellen does it every damn day then it must be good.So it was late at night and Ronnie and I were brian storming how we could get a pool full of noodles into Lewistons room for rounds the next day. With limited resources, and time we opted for something a little simpler but just as much fun.
A quick phone call to a trusted girlfriend who knows who to get stuff done and is ready short noticed….Dione was at the hospital with all of the supplies needed before rounds started. We brought in green ballots as we were being followed by the green team. We got everyone those fun masks with the big nose, moustache and glasses and for Roy our grumpy pharmacist student we got him a kitty mask in pink leopard material.
As they came into the room we cranked up Justin TimberLake – Can’t stop the feeling and got everyone moving. It was incredible. We danced to the whole song and then Lewiston proposed after to his favourite nurse – Nurse Jordyn. She said yes – a hundred times yes. It was like out of a Nicholas Sparks novel. We used a ring pop so it was pretty cute.
I am realizing we can have impact anywhere. I am realizing that our actions can determine the outcome of anything. We choose joy. I hope and pray that the Green Team will remember to have a little fun, to dance more. You just never know if you might be the only bright spot in someones day.