Tuesday, May 6, 2014

Botox From Maria's Perspective

As a child Gus's age, I was very ill. Many nights were spent in hospitals with high fevers, infections and kidney disorders that the physicians just couldn't figure out. Tests upon more tests in facilities that were not meant for children but because of the insurance that my family had, were the places that I had to be treated. I was held down and stuck with needles. Often more than 5 times because my veins were so bad. I was allergic to almost everything that they gave me and so vomiting became a way of life. No one at the time thought a child should have procedures or tests explained to them and my parents did not even understand what was being done to me so I was left with out any information. The memories of all this have left me deeply scarred. So when Gus was diagnosed with PVL and CP I knew what lay ahead for him.

From his birth we have always tried to do what is best for him. We have tried many therapies and researched many more. When Botox was mentioned, I was very apprehensive. No way am I holding my kid down and letting someone stick needles in him, even if it is the best thing for him. I am not strong enough. But as the years and Gus's CP have progressed, we researched the Botox therapy and decided that is was Gus's best chance to reach his potential.

I knew what was going to happen yesterday. I was assured by other parents, therapists and doctors that the procedure would go quickly and that the numbing cream plus the cold spray would lessen the burn of the injections. For those of you that don't know, inter-muscular injections usually contain HCL to break down the tissue enough to allow the medicine to work. HCL is Hydro Chloric Acid. It hurts!

I was torn as soon as the appointment was made. I knew I could not hold him down. I didn't know if I could be in the room with out getting upset. In January when Gus had to be admitted to the hospital, I could not be in the room when he had his IV put in. I got upset. I made his experience mine and could not let that happen in front of him so I left the room and Christi stayed. I was a coward.

So yesterday I was determined to not leave the room. I could not hold him down but I would stay and try to provide some kind of comfort or at least try to make sure things went as smoothly as possible. The doctor did try to explain what was happening while she did the injections. Other hospital staff was there to assist Christi in trying to provide a distraction. But nothing distracts you from that kind of pain. My son cried. He cried out, "Mommy!". And in that, "Mommy!", I heard, "Why is this happening to me? Why are you letting them hurt me? Why are YOU hurting me? Help me! Help me!". The procedure took less that 10 minutes but seemed to last forever. I swallowed the acid that boiled up from my stomach and did not shed a tear. Christi held him and his tears lasted only a minute. I told him he was brave and that it was over (for now). The  doctor spoke to us gently and said this was the best way.  I believe her but it comes at a high cost.

My son learned that I would allow him to be hurt. I do not know that he understands that it was for a good reason, no matter how many times it is explained. As an adult, I understand now how some things are necessary but even with that perspective,  I know it is an experience that will shape him. He has already asked for the doctor's name and how to spell it. He is preparing for the next time all ready.

Yesterday, I laid an awfully heavy burden on my son. Endure a painful procedure so that you may not have to have your hips pop out of socket, you can sit up, stand and maybe even walk. It is a horrible price to be paid by a three-year old. I wish I could pay it for him but I cannot.

We have seen little signs that the Botox is working. He seems more flexible and less spastic. I still ask myself, "Is it worth it?". I hope it is.

Botox was the worst thing I've ever seen happen to my kid!

Botox was the worst thing I've ever seen happen to my kid!

So, we went for Gus’s first round of Botox yesterday. (Don’t know why and how Botox benefits kids with CP? Article, though 10 years old, is still relevant, click here.)

Somehow I thought because we applied a numbing topical cream and left it on for over an hour, because we brought some really fun and exciting distractions for Gus, and because we had Child Life come in and be involved, that there would only be minimal pain and we could keep him from thinking about it while it was happening. THIS WAS NOT THE CASE!

First they laid him on his belly and he doesn't have much good control from there. Then the doctor used her weight to kind of sit on his butt while a nurse restrained his legs. Then they used the needles to do about 8-12 injections from his hips to his calves.

I was laying on my belly next to Gus managing the distractions so I didn't watch the procedure. With the first needle insertion he fussed and said, “Ow, ow, OW!” Then the burning must have started because his whole body went rigid. He yelled for Mommy and asked for it to stop. When it didn't and the needles and burning kept coming he just sobbed and I mean body wracking sobs and when he’d catch his breath he’d yell, “MOMMY!” over and over. These were the worst moments of my life and haven’t stopped haunting me since yesterday.

When they were finally done with the injections and I sat up so I could scoop him up, I was horrified at how much blood there was. Okay, it wasn't a ton but probably quarter sized smears around the sites on the last leg they did.

Maria was on the other end and watched the procedure. Her comments were:
“I didn't know they went so deep with those needles!”
“I wanted to vomit.”

The doctor said that the big kids tell her it burns for a few seconds and then it doesn't hurt again. Gus did seem to bounce back quite well and we pampered him the rest of the day. He got to go see the new baby giraffe at the zoo, he picked the restaurant for dinner (Bob Evans), and he got ice cream for a treat, etc. Maria and I avoided discussing our horrors in front of him but when I put him to bed that night and left the room he cried and wanted me to come back. Going in to talk to him, he opened up the topic with, “The doctor hurt my legs!” So we talked about it and I did the best I could to try to tell him that even though it was awful and it hurt, we are hoping it will really benefit him and help him move and feel better for a while. And I told him I was sorry, though sorry doesn't seem to begin to cover it.

Interestingly, he asked me the name of the doctor and even how to spell her name. She is most certainly on his hit list!

Kidding aside, this has really got me thinking about the psychological impact of this sort of experience. How terrible must it be as a child who trusts you to witness his mommies allowing this to happen to him? This is a kid who fake coughs and says he needs to go to the doctor to “feel him better”. How will this change his perception of doctors? Will he believe us anymore when we tell him things?

I feel terrible and that I should have, at the very least, prepared him better. I didn't tell him it was going to hurt so much or talk enough about why and what we were doing.

Perhaps the worst part is that I’m weighing in my mind what would make it worth it to do it again. Really?! Is there ANYTHING worth putting him through that experience again? Where is this coming from? Are we so desperate for him to walk someday that we would trade his innocence and trust for it?

So, this afternoon when I pulled his chair back from his table he actually placed both of his feet up on the table’s ledge. I gasped and showed Maria. We were told not to expect to see any results from the Botox for a week or two and here, 24 hours later, he’s done something that’s never been possible for him before. He could maybe do that with his right leg, though I don’t believe I've ever seen it happen but his left leg doesn't seem to have much voluntary movement at all so no way that’s ever happened.  And, though I hate myself for it, I find myself thinking, “If we get this in 24 hours, what else might happen? Where is that phone number to schedule his next round of Botox?”