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!

Physiatrist.. And then the ER

This past Monday we had our appointment with the physiatrist at Akron Childrens. Of course that morning Jacob woke up like a floppy noodle. I had never seen him with muscle tone that low since he was born. Go figure the day we take him to see the doctor for his high tone, he has the lowest tone possible. Jacob loves to cooperate like that when it comes to our appointments 😉. Although the doctor was not able to assess Jacob's tone to the fullest, he did recommend a couple different options. The one he really pushed was Botox. Botox is used to treat high muscle tone because it essentially paralyzes the muscle and helps it to relax. Jacob would receive injections in his calves, thighs, biceps, and fingers. The injections in these areas should help with his therapies, along with his overall well being. Right now Jacob's legs are so tight that diaper changes, clothing changes, and other daily functions are a struggle. It is like trying to break a wooden board in half just to bend his leg, let alone try to pry his arms open. The Botox will last 3-6 months so we should hopefully see after the first treatment if this is something beneficial for him. We will set up this appointment once it clears insurance. I wonder if there is a way they can add a few more vials for me?!? I think mama needs it more than Jakey! Lol!

The doctor also asked what equipment we have for Jacob. Shawn and I both looked at eachother and kind of laughed. We said our arms. If Jacob is not laying on his play mat or on his oversized pillow, we are holding him. We have tried to ask for different types of positioners or chairs for Jacob to sit/stand in, but there really is nothing on the market for special needs babies it seems. The doctor wrote a script for a special needs stroller, stander, chair, leg braces, and neck brace. At that point reality kind of hit me again with the severe needs of Jacob. His poor little body cannot even sit up on his own or even hold his head up. At least these items should provide him with some comfort, mobility, and less stress on our bodies from holding him all the time. Overall, it was a good first appointment with his new physiatrist.

After Jacob's appointment we decided to stop up to see the team at Palliative Care. As the day progressed Jacob was looking worse and more lethargic. We wanted to see if one of the doctors in their office could take a quick look at him. The main doctor who normally visits with us was there when we arrived and wanted to take a listen to him. Once she did, she said she was not comfortable with how he was breathing and felt we should go to the ER. So, our little trip to the physiatrist turned out to be a trip to the ER now. We headed downstairs to the ER and were seen relatively quick. When they called Jacob back to do an initial assessment, his pulse ox was very low and they ended up rushing him to a trauma treatment room. In a blink of an eye nurses were rushing him off and the room filled with 7-8 different medical professionals all performing different tasks. They were asking us a slew of questions and working quickly on Jacob. He was a lot worse than we ever imagined. He was working hard to breathe and they ended up doing several treatments on him. They were running various tests and xrays to find a cause. Jacob tested positive for RSV and the beginning stages of pneumonia. He was placed on a Vapotherm oxygen machine to help maintain clearer airways. It all was a blur to be honest, but once they got Jacob to a stable point they moved him up to the PICU. He remained there for the next three days. Each day he slowly got better and they lowered his oxygen levels. On the third day they moved him out of the PICU to a regular children's inpatient unit to continue to monitor him and ween him completely off of the oxygen. On the fourth day they were comfortable enough to let us take Jacob home. They sent him home with a breathing treatment kit along with a suction machine for his excessive secretions.

Let's just say last week was a really close call for Jacob. You hate to think about what if we went home and never stopped up at Palliative Care? I try not to let my mind go there. It was a long, emotional week but we are all back at home again and doing well!