The Chronicles of Austin

It’s been a challenging month, not just Austin related.

We had the trip to the ER for his Go-cart Crash, then his crown fell off, which luckily I discovered and the dentist was able to fix, next it was the bat in the house, followed the next day by the epic flood (which many in Metro Detroit had to deal with) and it was capped off a week later, August 17, when Austin broke his arm. In the first 21 years of his life I don’t remember any ER visits, maybe early on there might have been one or two related to an ear infection and children’s Tylenol not controlling the fever but other than that we have never visited the ER.  Since December 2013 we’ve been there four times - hemolytic anemia, allergic reaction to a vaccine, Go-cart Crash and lastly (at least I really hope this is the last time) his broken arm.

On one hand I’m wishing for a magical wardrobe, on another I’m beeotching because at one time I had one, it was called STX209, and because of outdated unrealistic measures to vet out the effectiveness of clinical drugs and no $$$ to carry on it was taken away.

The Sunday night episode started when Austin’s TV was not working. What was our first mistake? Maybe it was mom and dad both in the room with Austin present trying to diagnose the problem, maybe that made it worse, now I wish we would have somehow distracted him, got him out of the room and just took care of it but I can’t turn back time. No matter how hard we tried to reassure him that it was NOT his fault, that it was okay, that we had another TV (thankfully that was up high in the basement and not affected by the flood) he became more and more hyper aroused.  I took myself out of the picture because the last thing he needed was two of us with eyes on him and more verbalization. Dad had stood behind him trying to talk him down, holding his left arm at his side and his right arm behind his lower back.

Hyperarousal with a 5’11” 175 lb male can be rough. As much as I’d like to bury it in the sand, never share it with anyone in reality it’s not something to be hidden away, because I know I’m not alone. I feel shame that this could put Austin in a negative light but it is simply a fact of life in our home and I hope it would not prevent someone from seeing all the positives that Austin does bring to our lives.  Yet, on the negative side, on more than one occasion I’ve been scratched, bitten and/or punched in the face not your typical mother/son relationship. It's very easy for me to forgive because when it happens it’s not Austin doing it, I understand it’s the ugly side of fragile X.  Keep in mind fragile X is a spectrum disorder, not all have behavior issues, but sadly with those who do they can be extreme when they occur. The ugly side when on STX209 it was extremely rare and even after STX209, with the puberty years ending it doesn’t happen as often as pre-puberty or puberty years but it does on occasion rear its ugly head. In the state of hyperarousal one with fragile X can have enormous strength and Austin suddenly twisted his body and the bone just snapped. Jerry is filled with remorse, with guilt and like I wondering “what if”. It was simply a freak accident but that doesn’t take away the blame we feel, the wishing we had a do over or maybe would have approached things differently, and in all honesty we don’t know if any of that would have made a difference. 

Yet I still believe in the era of STX209 this would have been something I would have been able to simply talk him down from but with no STX209 words were useless.

When Austin had his Go-cart crash he demonstrated his high tolerance or maybe I should say his inability to understand pain. I would think a typical individual who would feel that moving in a certain direction hurts, how it feels would stop them from the movement but in a hyperarousal state that is non-existent, he is far from typical.

Dad took him right away to the ER, which only confirmed what we thought, he broke his humerus bone. Monday, thankfully, we were able to get in to see the Orthopedic Surgeon, at the Henry Ford Hospital downtown Detroit, who determined surgery was required. I was once again thankful that surgery was scheduled first thing Tuesday morning, we had to be there at 5:45 am and I didn’t have to worry about him trying to sneak food or drinks prior to surgery.

We left his side at 7:45 am and didn’t see him again until 3 pm. A little delay was because to treat the intense pain after surgery we opted for a nerve block so he wouldn’t feel anything in his arm, it lasts for 18-24 hours. To do the nerve block they needed him to wake up from surgery and move his fingers and thumb, just to ensure that the surgery did not impact his nerves.  Also to better manage his pain they allowed us to stay overnight in the hospital for 23 hours of observation. I took the night shift and once again was pleased that we were downtown because I knew he would have a private room and there would be no problem with me spending the night. My only mistake for me was opting just to sleep in the recliner when they would have brought me in a roll-away bed. 

The 23 hours gave us a better idea of his pain when the nerve block started to wear off (which did so early) so we would have the correct meds to treat it when we ended our stay at the hospital. With Austin we’ve taken an aggressive approach trying to ensure he is comfortable. We left the hospital with four more meds to add to the two meds he already takes on a daily basis.  I had to do a chart for what to dose when because one is once every four hours, one is once every eight, two are twice a day and his typical meds are once a day in the morning. Needless to say the alarm is set throughout the night.

He was very happy to return home and he’s got the best non-licensed care staff between mom, Natalie and Genevieve.

Yesterday he spent a lot of time in his room, he was tired and the pain was still kicking him in the butt. Today he’s much better.  Yesterday I probably drove everyone nuts because he had a slight fever (it was just below the number where we would need to contact the on-call hospital staff.) It did come down as time passed, still a little elevated but not near the call number. Since his splenectomy I don’t take any fever lightly, I was almost in panic mode when from two different thermometers I got two very different reads (under the tongue and under the arm). I actually visited my local pharmacy (one mile down the road) to discuss and they told me to trust the digital – which I still don’t entirely trust I might have to upgrade to a more expensive forehead thermometer just to ease my mind. I am truly a victim of the information available on the internet creating worry, I worry about Sepsis since his splenectomy.

Now I need to help him heal and hope and pray he recovers quickly. In time, I hope I’ll be able to put the “blame factor” to rest, sadly I think it will take a lot of time before I stop re-living Sunday night and thinking of the “what ifs” but that’s my burden, not Austin’s.