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Sunday, January 19, 2020

Dreaded X-Ray day

If there was one thing I could ask for Cerebral Palsy not to effect it would be the hips and spine. Okay, maybe there would be many many things but these parts of the body have stressed me out for 16 years. I fear and stress over every single X-ray day. His right hip osteotomy was the absolute worst surgery he has ever been through. His spine was actually okay until around age 12. I was actually blindsided when I was told that he had a curve and let me tell you it has added a whole new kind of stress to X-ray day.

People always comment on how strong you are when you parent a child with disabilities. I never understood it. I always laugh it off. I have never felt strong. The people that say that don't see me stress out or cry for a month or melt down into a blubbering mess right in front of the doctors or desperately try and hold back the tears because your son is staring at you and all he is listening for is 'surgery' or 'no surgery'.

Sometimes it does hit me that I have become mentally stronger, much stronger than I was when he was 1 years old and every doctor appointment was a knife to the heart. But is it strength or tolerance? Am I so used to receiving bad news that I am mentally prepared for it? Can I just turn off that part in my brain that wants to melt down at that very second? Is this strength or something else? I literally talk to myself while waiting for the doctor. I tell myself wait to hear what he has to say, maybe there are other options besides surgery. Maybe it isn't that bad even though it looks horrendous. Did you know the nurse leaves you in the room staring at this horrific X-ray of your child? You start to understand X-Rays when you see them every 6 months to a year for your entire child's life. I was immediately caught off guard the moment I walked into the exam room and the X-ray, that never looked like that before, was staring me in the face. I knew it was his and I still asked the nurse "is that him?" I knew it was his because after we left the X-ray room we walked down the hall and of course my observant self caught a glimpse of an X-ray on the screen behind some windows. While I thought to myself "that better not be my kid", I knew it was.

As I wait for the doctor Brendan asks "is it bad?" and I say "it doesn't look good" because I am always honest with my boy, I try to mentally prepare myself. I wanted to cry. I immediately text my husband a picture and commented that it looks really bad. I am ready to lose it but I start to talk myself down because I really hate crying in front of doctors, it is beyond embarrassing. So I tell myself that I don't know if this picture 100% means surgery, maybe there are other options like bracing or having better supports on his wheelchairs, maybe add therapy or stretching. So I calmly wait for the doctor and he talks to me for a long time. I really liked everything he had to say. He knows I am not pro surgery. I am not saying I won't put him through surgery but all of the surgeries I have chosen were to try to better his life. His right hip osteotomy at age 5 did not do that. I have regretted it ever since and I have overly researched everything since. I feel like I didn't know enough back then. I didn't know there were other options. I didn't know anything except that his hip was 100% dislocated and we tried many things to stop that from happening and none of them worked. I was told he had to have surgery and so that is what we did. I trusted a doctor that in turn messed up his leg position for life. I may still hold that one against him 12 years later.

The doctor said we don't do surgery based on an X-ray but rather take everything into consideration. I don't think this was always the case but this doctor is one of the best scoliosis doctors in RI. He jokes around which definitely kept me from crying. He made a point to tell me some doctors in Boston would perform surgery only based on this X-ray (hmmm wonder if that is the same doctor Brendan had), but he has learned not to do that. Brendan has a 50 degree curve (which I obviously looked up later that night and found out that is a severe curve) but it is not causing him pain, breathing issues or any other problems so we will leave it. He said if any of those things change we will revisit this conversation. He explained that if this curve drastically changes in 6 months we will have to fix it. He also said that we never truly know if this is the right decision. He has regretted some decisions before while performing extremely difficult surgeries and wishing they had done them years earlier. He said if I told him I wanted to fix now and be done with it he would. I did not ask for that, in case you were wondering. I did listen to everything he had to say and I will keep all of it in the back of my mind because I do know it can change. He explained that he didn't think Brendan would benefit from having a rigid rod in his back. He thinks it would hinder him and his abilities and that is the last thing that I want to have happen. He said that Brendan uses his body to move around and having a stiff back may look good but it will also make it harder for him to walk and independently do things.

I left feeling okay about everything. I completely understand it all and I wasn't even upset. I often get depressed after his orthopedic appointments. When I was told his left hip was out of place by 40% I went into a sad place for a solid month. I couldn't snap out of it but instead of doing nothing I sent his X-rays off to two other doctors for their opinions. I was 100% against surgery but I wanted other professionals to be on my side. If they said he should have surgery then I would have sucked it up and been there for Brendan every step of the way. But they didn't say that. They actually said 40% out can be normal for a kid with CP. They said at his age his bones are hardening and it may never move again. Now there is always a possibility and that possibility made Brendan's RI doctor nervous. He wanted him to have surgery to fix it now instead of later because it would be more difficult with solid bones. I had to make the decision and live with it. I decided against it.

His doctor told me this week that he was really surprised that his hips were stable. He really thought he should have had surgery but basically we proved him wrong and we are fortunate that his hips haven't moved. He seems to think we are in the clear and didn't recommend surgery. I have seriously been putting this surgery off since Brendan was 8 years old. I still remember another RI doctor, that I didn't much care for, laughing about his left hip and stating that "hip is taking a beating"! I was pregnant and yet again cried instantly when the doctor suggested immediate surgery. I was pregnant with his sister, Makayla, when I was told he had to have his right hip surgery so it was total deja vu. Regrettably I couldn't handle it and just ignored his hip for a good year. I think it was only out 20% and I knew surgery wasn't going to happen while I was pregnant or had a newborn to care for. We had the same conversation a few years later but I still didn't want to hear it. My gut said to not do it and I have trusted my instinct for 9 years and here are we being told we don't have to fix his hip. Do I question if it has caused his curved spine? Yes, but no one has said that to me. I even asked and was told no. Many kids have scoliosis that don't even have CP so apparently he is just unlucky. I am friends with a few moms with teenage boys with CP and they also are going through the same exact thing. They start growing and
they get a curve in their spine.

Right hip surgery 2007. A few weeks after he was smiling and happy:

You may look at Brendan and think that he looks great, he is well off, he may even look like he has mild CP. Yes he can talk, he can use his phone and computer and he enjoys life. He is hardly sick and hasn't ever spent a night in the hospital due to illness but let me tell you he has been through a lot. The spasticity from his CP effects his body. His prematurity definitely effected his body. He has had 13 surgeries, 13.... all due to being born early and his lovey brain damage that still tries to destroy his body.

So mentally I am not sure how I am strong, maybe I just have to be. Some days I don't want to be but I am for him.

So here is to another 6 months without surgery. We are going to try a soft brace when he walks, rides his bike and exercises but he doesn't have to wear it all the time. It is more for support and to make him feel more comfortable doing all of these things. Keep him in your thoughts and lets all hope for a positive X-Ray in 6 months!

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