Well…we are now seven weeks post-op and Ben is doing quite well. He had a great summer, and we were even able to get out to Grandpa’s and do some fishing! Not having nerve pain post-op this time is really a gift…the healing has been so much easier than our surgery in 2017!!! I don’t really like posting this gross stuff, but as a mom, I know I would want (and did want) to be able to see what to look out for in regards to potential hardware problems. So this post is mostly for the worried mom crowd – I totally get you!!! Worry away!!! I ran this by Ben, and he is ok posting these pictures. Ben’s recent hardware problems happened quite quickly for us…it was about two weeks from our first sighting to surgery. I am grateful this happened in the summer because I just happened to notice the little red dot on Ben’s back while he was hanging out in the hot tub. Had it happened in the winter, I think I wouldn’t have noticed it and it could have easily become a complex problem. I will now be more diligent in making sure I peek at Ben’s back every week – summer or winter. He did not fell pain with his hardware putting pressure on his skin – even when it was further along.
This was the little red dot I noticed on June 29th. I don’t think it was alarming at all, I just didn’t like its position. He’s always been a bit bumpy with hardware poking out because he is so bloody skinny. I do feed him quite regularly; although you can’t really tell from the photos.
I have no idea where he gets his hairy back from. I just checked mine and mine seems ok…I am assuming it is from Jesse’s side of the family. See how it has become a bit more prominent in just a few days.
And the following day it became even more prominent. In case you’re wondering…no…I do not just randomly stick tape on my child…it was all part of a bigger plan. Ummmm…I’m not sure what the plan was at that time, but clearly there is evidence of something going on there.
Both of these photos were taken on the same day. This is about 9 days from when I initially noticed it. At this point, we had a tentative surgery date booked for July 24th. I decided to send this photo to Shriner’s late Wednesday (the 8th) to tell them it seemed different to me and ask what they thought. They responded immediately the next morning and booked us in for surgery on Tuesday instead. My Edmonton team was working closely with my Montreal team to take care of us. The Shriner’s were also working closely with Montreal Children’s Hospital to arrange for pre-op clinics and book us in on their side as we wanted quick access to the ICU if needed. They booked us flights and hotels within a matter of hours. We are surrounded by a village of helpers!
The infamous doughnut – Ben wore this almost from the point we noticed it. This was to help keep any pressure off of that area. My friends Tara and Stuart came up with the design idea for this. I did notice that the pressure on the wound was still advancing despite our doughnut girdle. We then decided to not let Benjamin bend in the hopes of not progressing the wound. We literally had him standing straight or sitting in a recliner for the three days before we left. He was pretty happy to be left to play video games without nagging during this time.
We took these xrays during our pre-op. I’m not sure what the giant ice cube is sitting on top of his spine?!?!?! You see how that rod has somehow twisted and flared out. We really have no idea why that happened unless it’s just that Ben’s body is trying to be crooked (he can be quite persistent!!!). Before surgery we thought the rod had somehow loosened on top and rotated. However, when the surgeon checked it during surgery, it was still tight on top, so we are not sure how this really happened. During surgery they used some sort of domino tool to straighten the rods and resecure the screws or put new ones in…I can’t really remember what he said. I think parents listen better AFTER they see their child post-op.
This was when we took off Ben’s bandage. You can see that part of his sensitivity lies in the fact that he has a hairy little monkey back. The doctor told Benjamin that he will need to wax himself like his mom does before his next surgery. Then everyone looked at me and realized I was sporting full on ‘in isolation for all of 2020 non-waxed facial hair’, so it was pretty awkward for all of us after that. Crickets, weird grins, and glances away…that’s how we roll.
So…that’s it. Ben has healed nicely, and he is getting ready for school this year. He has had terrible asthma this year, but we are working closely with our pulmonology team to keep him healthy. We have another phone call with them in a few weeks, and they want to see us in-clinic again soon as well. I know that the decision to go back to in-school classes has not been easy for any parent this year. We have had a lot of discussions with our medical team about this, and at this point we feel confident enough to send him back to school. We have spent the last month adjusting Ben’s medications to increase his baseline oxygen saturation. I measure his oxygen levels almost every day. He has also had a few weird episodes. Remember when I said he couldn’t see when he saw his scar and had to sit down. Well…he had another one of those incidents. He said it looked like snow static on tv except it was all colourful. The big difference is there was no stress this time – making pizza pops. So, I ran it by the doctor who thought he might be fainty because his blood iron is low, so we will be doing bloodwork again this week. Ben is pretty sad about the bloodwork! Hopefully that will be it and we can just put him on iron again. Other than those two little incidents, he seems quite awesome!
And….last but not least…we are all switching schools this year. This has been a tough, gut-wrenching decision for us, but we are all moving this year. I will be teaching at a new school, and Hannah will be there with me. Benjamin will be on his own (about a 2 minute walk away from us). He is a bit hesitant about the move. He loved all his people at the old school so much – he is reluctant to leave them. He has never been in a school without me lurking in the background. He also hasn’t been in school for 9 months! Of course I am driving the new school a bit crazy, but once the year starts up, I should be too busy to bug them as much as I want to and this should prevent a restraining order…hard to say though? As I’ve said before, the hardest part of our journey is trusting others.
Ooops…one more thing. I suspect that we will be implanting Benjamin’s hearing aids this year, which means more screws in my child’s head (if I had a quarter for every screw we put in this child…). When we returned home from the hospital in the spring there was a message on our machine saying they were ready for us to do our implant surgery and we were like…seriously?!?! Lucky for us (woot…woot) the world as we knew it came to an abrupt end (I think Ben has super-powers) and our surgery was cancelled for June. As surgeries were just starting to be reinstated this summer, the hospital we were going to be surgered at (what is that word??? “operated on” seems so old school) experienced an outbreak (seriously Ben…cut it out!!!), so now we are waiting again. I suspect we will hear something again in the fall. Although some of us (those under 4 feet our family) are unhappy with the upcoming surgery, the rest of us know that this will hopefully give us better access to some of those higher frequency sounds the “s” and “th”, which I think is a good thing. I am worried when I tell him to “sit over there” that he won’t be able to differentiate the word and do something inappropriate. Nobody wants to go through life missing an “s” sound. K….that’s definitely it for now.