Disability

On Sundays Corbin plays soccer in a league for kids with Autism (it goes against my belief of inclusion but sometimes he needs to decide for himself). This past Sunday we went to the states to do some shopping and we were happy with our purchases but pretty tired. We contemplated letting Corbin skip the game but he takes his commitment seriously and we don’t want to discourage that in any way. The plan was that I would take him to soccer and stop at Little Caesar’s on the way home.

We were at soccer, it’s an indoor field, and the way the benches are you can’t see the other end of the field unless you lean way out. So it’s the second half and the teams switch ends so now I can’t see them playing easily and Corbin decides he’s going to be goalie. I watch for a few minutes and take a quick break to send an email. Suddenly everything gets quiet and then someone yells “call an ambulance” and my stomach sank. I cautiously poked my head out to look and sure enough it’s Corbin in his bright yellow goalie jersey lying on the ground. I get up to go to him and one of the mom’s stops me and says “Be prepared – I heard it” so when I got there his legs were out in front of him and his toes should have been pointing up but his whole right foot was lying sideways against the ground with a big bulge on the side of his foot. The interesting thing about the game was that we were playing against the Firefighters (the head of the soccer league likes to set up exhibition games for these young adults so they face off against the police, other soccer leagues and the firefighters). The firefighters acted right away – they elevated his foot and kept him talking. When they called for the ambulance it was around 6:15. We waited until 8 for them to arrive. Throughout it all he remained calm and quiet (not usually words I use for Corb). As soon as they arrived he asked for something for the pain. They tried to place an IV to give him Morphine but they couldn’t find a vein so they gave him something less potent in a shot to the arm. They stabilized him, got him on the gurney and drove him to Windsor Regional Hospital.

At the hospital they had him go for x-rays but first the triage nurse insisted he go in a wheelchair. I thought she was crazy but what do I know? He went in for his x-rays and a few minutes later the door flew open and one of the technician’s grabbed a gurney and they placed him on it and headed somewhere with him, on the way saying in disdain “a wheelchair, really?” and took him into a room that read Resuscitation and you can imagine I tried not to freak. We waited for about an hour while they tried multiple times to place an IV and then the doctor came in and said that he had badly fractured his ankle as well as dislocated it and torn some ligaments. But she also said they would probably send us home and have him go to the fracture clinic the next morning. I couldn’t imagine being able to make him comfortable at home but I wasn’t about to argue. First though they needed to reset the dislocation. I left the room for that but it was done quickly and Corbin was out for it, hence the resuscitation room.

Just when I had resigned myself to the plan the doctor came back and said she had consulted with the Orthopaedic surgeon and he wanted Corbin admitted and now we just had to wait for a bed. Multiple times in the ER I shared that Corbin has Autism, Bipolar disorder and an Intellectual Disability. I kept hesitating about how much to tell them, how much they really needed to know. But he was anxious and saying some inappropriate things so I thought it was important to let them know. They gave him something for the pain and told me I could run out and get him food because as of 12:30 he wouldn’t be able to eat anything because of the impending surgery. I rushed to Subway with 5 minutes to spare before they closed. Little did we know that would be his last food for 24 hours. We settled in to try to get some sleep but every time I would start to doze off Corb would wake up, still in pain and anxious to make sure I was still there.  The move to the surgical floor came around 4 a.m.. At 8a.m. we saw the Orthopedic surgeon briefly and he explained Corb would need a plate and screw put in his ankle to strengthen it and hopefully we would have the surgery soon but it was explained that there were three lists for surgery. List A is for emergency’s; List B is for elective scheduled surgery; List C is for people waiting for a spot to open up in the ER. On those lists there was also a ranking so an elderly  or pediatric patient would take precedence over a young adult male.

So we waited

at 8:30 they came to take blood to prepare for surgery

at 9:30 they came to take blood to prepare for surgery

You read that right. They came twice. I had to argue with them that they had indeed already drawn his blood. The lab lady went off to call down to the lab and never came back so I guess she learned I was right. But imagine if I hadn’t been there – they would have done it again. At around the same time his IV stopped working and they had to find a new spot. Unusual for him, they couldn’t get a vein and had to keep trying and he soldiered through. He began asking for something for pain but in his usual Corbin way he didn’t express it very well and the nurse thought he was just wanting something for the pain of the IV. It was at that time I taught him how to use the call button and say “I’m in pain”

Image may contain: 1 person, closeup and indoor

At 11a.m. they came to tell us that because he was still 18 he could be housed on Pediatrics. Corb was happy as they have gaming consoles and a play room. We got a nice corner room and I begged for a regular chair as all there was in there was a rocking chair. The nurse grudgingly got me one and I sat down

So we waited

and waited

Corb begged me for water which I could not give. He was in a lot of pain so they started to increase the Morphine and the Gravol (used to settle his stomach due to the Morphine) and he started sleeping most of the day. Good thing because 10:30 p.m. came and went and no surgery. They scrounged up a tray of food including a tuna sandwich that he wouldn’t even let near him. So he drank his little apple juice and ate some peaches and went back to sleep. I watched over him and fell asleep draped across one of those little tables that goes across the patients bed. The night nurse took pity on me and found me a chair that pulls out into a bed. I crashed after having been up since Sunday. But I didn’t have my CPAP machine and I am guessing by how sore my throat was in the morning I must have been snoring like crazy.

So we waited.

and waited

People came to visit. Corb slipped in and out of consciousness. The nurses got better at responding to him as soon as he said he was in pain. Overall we were treated very well and the nurses empathized with us and our wait. Tuesday 10pm rolled around and we were told that he had once again been bumped from the lists and was being put back on List C. I asked when he would get to be on one of the other lists, I mean this could go on forever!!

Wednesday morning I called the patient representative and explained our situation. I also laid out for him that Corbin’s mental health was being affected by the wait and all the holding off of his medications for surgery that never came. He said he would make some calls and get back to me. WIthin 2 hours he was standing in our hospital room telling us the same thing we were told day after day – he’s on the list and they will get to him as soon as they can. Not good enough was my reply. I called the Rep. up 2 or 3 more times that afternoon asking for an update. Around 8pm we had just begun to give up hope and I was ready to pull a Shirley MacLaine a la Terms of Endearment.

A certain someone who shall remain nameless told me that what had happened was Corbin was considered a surgical patient even though he was on Pediatrics. So all the elderly people and even a boy that was 17 who got hurt and had surgery the same day for the same injury – they bumped Corbin off the list repeatedly. He basically got stuck in a hospital vortex and only standing up to them made them do anything about it. They also told me that even though it was in his chart multiple times, the OR hadn’t been informed of his disabilities.

Almost exactly 72 hours after our ordeal began they came to take him down for surgery. The surgery took all of about 45 minutes. He waited 72 hours in pain for a 45 minute surgery. The next day they gave him his last shot of Morphine before taking out the IV and then the Physiotherapist came to take us to the surgical floor to show him how to use crutches and a walker. He used each briefly and even the PT questioned how much he would remember as he was so out of it. By 1pm Thursday we were discharged.

Image may contain: 1 person, sitting

July 26, 2017

Terms of Endearment

On Sundays Corbin plays soccer in a league for kids with Autism (it goes against my belief of inclusion but sometimes he needs to decide for himself). This past Sunday we went to the states to do some shopping and we were happy with our purchases but pretty tired. We contemplated letting Corbin skip the game but he takes his commitment seriously and we don’t want to discourage that in any way. The plan was that I would take him to soccer and stop at Little Caesar’s on the way home. We were at soccer, it’s an indoor field, and the way the benches are you can’t see the other end of the field unless you lean way out. So it’s […]
April 9, 2017

What Matters – Giveaway

I was just doing some cleaning and realized I have 2 copies (one dog eared, one in pristine condition) of What Matters by Janice Fialka. It is an amazing book about raising her family and her son making his way in the world, fully included at every step of the way. Janice has been an inspiration to me since before we even adopted Corbin, and became even more important to me after. To win a copy of this book do one or all of the following (each one will get you a ballot in the draw):  Leave a comment here  share my facebook post Like my FB post Make sure you leave a message in the comments if you share […]
December 14, 2016

Advocacy is not a 4-letter word

There are times where, as the parent of a child with a disability, you will be told to fight for what your child needs. Us “special needs moms” – we tell each other “fight for him, you know him best” and “the squeaky wheel gets the grease”. People get worked up hearing other parent’s stories. At times I too have believed this way of thinking and engaged in my fair share of fights.  Last week I read a piece that spoke of being a Mama Warrior for your child with special needs and it just seared my heart.  I genuinely felt very saddened by the notion that as a whole, it is thought that parents of kids with a disability […]
December 6, 2016

Extraordinary Needs

A woman I consider my mentor once told me that her biggest regret was not spending more time with her other kids as she was always busy with her daughter with complex medical needs. Later that same week my 5 year old son sat in the back of my van and piped in “Mom, let’s have a meeting”. I asked him why he wanted to have a meeting and he said “So me and you and Dad can be together. I know, I will bring paper and pens and you bring snacks”.  I wept silently the rest of the way to our destination. My 5 year old had figured out one of the only ways to get his parents attention […]
October 18, 2016

Checking In

So I haven’t blogged for several months. Honestly the summer flew by, we only got to go camping in our new pop up trailer twice and both times were unbearably hot and humid – like sit in your own sweat all day type humid. Our niece Teegan came down for several weeks and she was Corbin’s support person in the evenings. He loved having someone his age to watch movies with and she even managed to get him to go for walks. We loved it because we weren’t inundated with a million requests. He also got his beginner driving licence. Corbin also found his way onto this blog. I knew it would happen one day. I have tried to be […]
July 1, 2016

Out There

I have been submitting writing to other sights and then losing track when they are posted. So here are the last two (that I am aware of, lol) on Rage Against the Minivan and The Mighty So enjoy and please leave a comment if you are so inclined. Happy Canada Day Everyone