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Thursday, March 23, 2017

The good, the bad and the ugly!

This week has had its ups and downs that is for sure! We saw Brendan's orthopedic and received some devestating news. Then his max mobility arrived which means insurance covered it. We are off to Texas in just 3 days and I am not ready in the least bit. My brain can't take much more. I am emotionally drained.

So we went to check on his knee before we head off to Texas and all looks okay. His knee isn't doing great because of his poor walking pattern basically his entire life. His knee cap is higher than it should be and a tendon is over stretched which is partially why he can't stand up straight. His tendonitis is doing okay but his knee gets very hot to the touch when he is working out. If we ice it afterwards he seems to be okay. We haven't had him walk 30 minutes straight since the pain began so we aren't sure how well he is really doing. We also checked on his hips and of course the dreaded words were used. SURGERY. Brendan's left hip is 50% uncovered. It is basically sliding out of place. I am extremely upset about this because I have done everything I could think of to help this hip stay in place. It has been migrating since he was about 8 years old. Now it could stay at the 50% or it could get worse. We just don't know. We can not predict what will happen. Of course the ortho surgeon wants to cut him open, hack through his femur and bolt it back into place. Definitely NOT how he explained it but most definitely what happens and absoluletly NOT what I want to do. Thankfully for facebook groups I have found over the years I have found less invasive procedures out there. I kept them in the back of my head because maybe I just knew this day would come.

Dr. Yngve and Dr. Nuzzo perform a different style of hip surgery for our kids called SLOB and Cafe door. Of course these are the doctors that also perform less invasive SPML. The ONLY two doctors that I have found to actually help our children while making it less painful and have less recovery time. I give them a lot of respect because everyone else honestly doesn't seem to care what is best for our children. They see $$$ signs when it comes to these operations. I wasn't given any advice on how to keep his hip in place. I wasn't given any other options. It was well he needs surgery and I would do this in a few months. Oh and he also told me Brendan is struggling to walk now and will never even get back to the point he is at after this surgery. So of course I cried right in front of the doctor and who knows how many other people working around me. I didn't care. I only cared that I do NOT want my son to go into surgery for the 11th time. I do not want his hip cut and bolted back together. I had a mini melt down. I cried for most of the night. I had a pity party and that is okay because sometimes we are allowed. This life isn't fair. This life can really really suck at times for the lack of a better word. This CP is destroying my son's body and has given me a head full of grey hair and it can take a hike!

I am so done. So sick of always getting bad news. So sick of him having to live this life of pain and appointments and surgeries. BUT I can't be like this for long. I have to get over it. I have to move on. I have to smile again and pretend this life is just fine. We are going to be okay. I know that we will all get through it if it comes to that even if I don't want to. I do know that this doctor will not operate on my son. I do know that I am holding off because no one in this house needs a surgery right now. I do know that it does not seem to cause him pain so I am not going to do this to him right now. I do know Dr. Park told me if his hip had gotten worse (over 50%) after SDR he would need hip surgery but it hasn't gotten worse. It just got back to pre SDR subluxation. I do know god for bid if he does need surgery I will make sure Dr. Yngve or Dr. Nuzzo operates on my kid to save us all some pain and misery.

So CP has sucked the life out of me yet again and boy do I hate when it does that. Sometimes life isn't fair. I know some people have it way worse than us. I know that this news is by far less devestating than if the cancer word was brought up. I know all of this but my heart and my brain don't care. They just want to cry and scream and be mad for a while. I tell myself and my husband that I am allowed. I have been living this life for over 14 years and I am tired. I am burnt out. I just want a break.

Breaks don't happen around here. Today I got a call at 7:30 am that his smart drive by max mobility arrived and his PT's boss basically text the mobiity company to say that she wouldn't be there. I was NEVER even informed his device was ordered or being delivered today but thankfully due to owning our own business I was able to go to a 10:30 am meeting so that he could get his power assist device. Now this is super exciting. It basically gives his manual wheelchair power assist. It will save his shoulders and arms from getting a beating wheeling himself around his whole life. I have never wanted a power wheelchair. I know he will have one some day but not yet. He is awesome with his manual chair and it has been great therapy for him. This item allows us to keep his small chair yet give him some relief. He needs to learn how to use it but I know he will. I took some videos of him learning today. We just need the weather to warm up so we can go outside and practice. It is really neat. He got the newest version and insurance paid for it. So today was a bit of a happy day even though those lurking feelings inside of me keep wanting to creep out. I am not allowing them but I am pretty grumpy today.


Sheila said...

I'm so sorry you got the news you didn't want to hear. But you're right, you deserve the time to cry and scream. Sometimes it's the only way we can cope with all that is thrown at us. You are an amazingly strong woman and I know you'll be back in fight mode soon. Brendan is so lucky to have you!

We take it day by day said...

Thank you Sheila! I am so much better tonight. The smart drive delivery helped me focus on something else. I tend to snap out of my moods quickly. Thank you for the support!!!