Tales From An Autistic Family: Catch Up Part 1: Accident and Surgery

This is part one of my catch up posts. I’m really struggling with writing (and everything else) lately. I don’t know if it is just burnout from the symposium planning and speech writing, whether it is my usual burnout, or something else. The days seem too full. It’s like every time something is behind me, several other things get added.

I thought that I would not push myself to do much for a week after the symposium in November and then I would try to make a schedule for organizing the house.

It didn’t happen.

Less than a week after the symposium, Monday, November 9, 2015 to be exact, Micah badly broke her elbow falling from a horse. At first, I thought she may have just dislocated or subluxed it. We went to ER and they x-rayed it. She was in terrible pain. The doctor told us it wasn’t a bad break and she likely wouldn’t need surgery. She was splinted to her wrist, given some pain killers, and told to go to the fracture clinic in three days. We were given no other instructions. Good thing I knew that you can’t get cast’s wet!

I sent Micah to school on Tuesday morning and we thought all would be well. She was in lots of pain but still managed a full day of school. The pain meds also made her sick. Wednesday, she could only manage a couple of hours at school and I had to pick her up. I have no experience with broken bones. My mother broke her ankle a couple of times but I have never broken anything. I know it is painful but thankfully have not experienced that pain and other than the medication, I didn’t know what to do for Micah.

Thursday morning, we went to the fracture clinic. We saw a doctor who proceeded to tell us that it was a really bad break and the ER should have sent us to the clinic sooner. The elbow specialist was in surgery but they talked to him and we were to see him the next Tuesday, with surgery on the Wednesday. The doctor and technician finished the visit by having Micah's arm splinted better- supporting it all the way to the hand, gaving her some new pain meds, and giving us instructions which should have been given to us in the ER. She was told to keep her arm elevated (at this point her hand was really swollen) and to stay home from school.

Tuesday, we went to see the elbow surgeon. I don’t think either of us were prepared for that visit. It turned out that she had dislocated the elbow, broke the radial head, and tore off the tendon. They would hopefully be able to plate and pin it, otherwise she would have to have the radial head replaced. I am autistic and when I get unexpected news, I may meltdown right away (very rarely) or shut down. I would say I did a combination. I don’t think either Micah or I really knew what to say. I do know that inside I was panicking. I felt I had to hide it from Micah and be the brave adult/parent. It is very hard to hold in a meltdown! Now that I am writing this, I realize I didn’t ask Micah what she thought of the whole thing. The good news was that the surgeon would work on her the next day and he said she should get full range of movement back (normal range anyway, not her usual hyperextended). I made sure to let him know that Micah has EDS (not diagnosed officially yet but he didn’t need to know that!). It was important that he take any precautions necessary. We were told to report for surgery at 9am.

Wednesday, we went to the hospital. Micah wasn’t allowed to eat or drink, so we didn’t give her her anxiety medication and I didn’t think to ask if she could take it. We waited and waited. Whenever I have had a procedure at our hospital, the arrival time is usually an hour before the procedure. We found out that trauma surgery doesn’t work that way. We told the staff (and surgeon the day before) that Micah has a needle phobia. We told them that a blood test and IV would have to be done after she was given gas in the OR. They came and tried to get blood anyway. I guess they didn’t believe us on how bad the problem was. It did not happen. We waited and waited some more. They did give us our own waiting area so Micah didn’t have to sit with lots of other patients. Both of our anxieties were getting bad. The surgeon came and told us that there was an emergency so he was late to his OR. He wasn’t sure he would get to Micah but told us to stay around. I was hopeful that he would fit her in. Micah was really struggling with not eating and having to wait. The surgery got cancelled. Micah was sent home after 2pm and told the original fracture clinic doctor would contact us and do the surgery on Friday. We were very disappointed. We had also already been told by that doctor that the elbow specialist was the best for Micah. I couldn’t see the original doctor suddenly doing the surgery.

I waited until later on Thursday and then contacted the elbow specialist’s office as we hadn’t heard anything about Friday’s surgery. There was a message saying the he was away until the following Tuesday. My anxiety went up. Micah was in lots of pain and it was over a week since she had broken her elbow. How can doctors just leave someone hanging like that? Especially, when she was in so much pain. I started calling the hospital to track down the doctor whom we were told would be doing the Friday surgery. As you might remember, the phone is not my thing. I am not good at using it. I tried various departments and got nowhere. I told my husband what was going on. He called and found the doctor to leave a message for him. We went out for dinner and my husband had his call returned. We were to come to the hospital right then to meet. The doctor explained that due to the extent of the injury, none of the surgeons in our region felt comfortable doing the surgery. They wanted the elbow specialist to do it. He explained more about the injury and how it was really important that a plate and screws were used and were better than a radial head replacement. Replacements wear out meaning multiple surgeries over a lifetime, especially in one so young. He also said he would send the x-rays to a trauma hospital in Toronto where he had a friend to see if that doctor could fit Micah in. Turned out the original elbow surgeon left the country for a week and that was why he left Micah.

We got the call on Friday that Micah was to go to St. Mikes on Monday to meet the new surgeon and she would have surgery Tuesday. Surgery was scheduled for 2pm. This time we had a proper time so our anxiety was lessened in that area. I was allowed to go with Micah to a small room to wait. This time it happened! Surgery was supposed to be finished around 3/3:30. It was and the doctor called the waiting room to tell us it went well. He was able to use a plate and screws and reattached the tendon. Usually, the first recovery room takes an hour to an hour and a half and then the next recovery room where we could go and see Micah is about an hour before time to go. We waited and waited. It was getting late and they still hadn’t come for us. We were finally told that there was an issue with recovery but they didn’t say what. I thought maybe Micah was anxious because we weren’t there as promised. I had my husband remind the lady at the desk that she is autistic and the problems could be related to that. They had the lady go down to the recovery room to talk. She came back and told us that Micah’s heart rate was high. We said it was probably because she was expecting us. The few remaining of us in the waiting room were taken to another room closer to recovery since the main room was closing. I was getting really worried about not being with Micah. The nurse had told them in the recovery room about Micah’s autism and anxiety and one of the doctors got the brilliant idea (sarcasm) to ask her if she knew what was wrong. She knew of course! She told them that she hadn’t had her anxiety medication since the morning and was long overdue. They gave her some medication and then things calmed down. Why they couldn’t have just asked earlier, I don’t know.

Before surgery, the anesthetist had asked Micah if she wanted a nerve block. She and I discussed it. Neither of us like the numb feeling of our mouth when we get fillings. I know it causes panic attacks in me. A never block lasts a lot longer so she said no. Due to lack of nerve block, she was in severe pain after the surgery. Medication helped a bit but it took a couple of days for the pain to go down.

The surgery was a success. Micah was off school for over a month before going back for half days the week before Christmas break. We are now in February and she almost has full range of motion in her arm. She is still getting physiotherapy for it but will hopefully finish soon. She thinks her scar is pretty cool and is not self-conscious of it at all.

We are autistic and having our routines changed during this time was hard for all of us, but especially Micah. For about three weeks, all she could do was lay on her back with her arm up. Things are now mostly back to normal. There are very few actions she can’t perform with her arm now. Micah is very excited that she will be able to ride again in March. The surgeon has okayed that date. I’m not sure how I feel about that. I have ridden for many years but I don’t want her to get hurt worse than she already did. She also has Ehler’s Danlos but does not have her diagnosis yet. I have not ridden since her accident either. I can’t afford to get hurt like that or worse.

Part two coming soon!