Botox and Braces

This past Friday we went for Jacob's first Botox treatment. Before the appointment we stopped to get his legs casted for his new leg braces. Currently He scissors his legs and his feet turn inwards. The leg braces will help keep his feet flexed, straight, and his legs apart. He did very well during the casting and didn't make a peep. He was a little trooper that day. We were able to pick out a pattern for the braces so we chose the planes, cars, and trucks. For anyone who knows our other son, he will be elated to see the pattern on Jacob's leg braces and will probably want a pair of his own. We should receive his braces, along with his hand splints, in a week or so.

We then went to Akron Children's for his Botox treatment. What we thought was going to be a quick and simple procedure, yet again, turned out to take a different direction. When they took Jacob back for sedation they did not like the way his lungs sounded. Ever since his hospital stay a few weeks back Jacob has not seemed to fully recover from his respiratory infection. They confirmed that back in the sedation room. They said he was very wheezy, even after suctioning his airways. The doctor than laid out two options. We could either wait and reschedule his injections for a later date, or we could go ahead with the procedure and just give him a pain medication with no sedation. As we talked out the options, rescheduling did not seem to be the best plan. Jacob on a normal day is raspy and wheezy with his breathing. It is just the nature of his diagnosis. If we waited three more weeks we most likely would land ourselves in the same situation.

On the other hand, the second option seemed so painful and inhumane at first. Jacob would receive a heavy pain killer, but would not be sedated and would be fully awake during the procedure. Jacob was due to receive 24 injections in his biceps, forearms, thighs, and calves. I hate taking our children to the doctor to get their immunizations, and now we were being asked to go ahead and stick Jacob 24 times while he is fully awake. As horrible as it sounded, our doctor informed us that this is how it was done not that long ago. He also mentioned that some of his partners still carry out this treatment on their patients with no sedatives. Our doctor stated that he chooses not to practice this way if he has the option to sedate. In some cases like Jacob, it is really the only option you have if you want to receive the Botox treatment. We also thought about how irritable and miserable Jacob can be on a daily basis and it may be best from the quality of life stand point to sacrifice 10 minutes of pain for 3-6 months of possible relief.

So, I hope Jacob won't hate us later in life for choosing to do the injections that day. Let's just say that was the longest 10 minutes I have ever been through. Shawn, myself, and the nurse had to hold down Jacob while the doctor injected him over and over again. To hear his cries and screams just broke my heart knowing there was nothing you could do to comfort him. I think it is safe to say after witnessing that I may not be cut out for the medical world. But at least it is over with and hopefully Jacob will be able to relax his body. They informed us it can take 3-7 days to see the effects from the Botox. We are on day two and have not seen any improvement as of yet. Fingers crossed it worked!

Next up is our appointment with the neurologist tomorrow. We shall see what that appointment brings. Stay tuned!