Thursday, October 17, 2013

The Next Leg of Our Journey

I have come to the conclusion that someone truly needs to write a handbook on how parents deal with kids with cerebral palsy and other chronic conditions. After 13 years of questioning, learning about and fighting the system, I have learned that there are few (even those who are suppose to know) that will willingly direct us ignorant parents in the proper directions. After all these years, only now am I realizing just how mislead I have been.

Please don't think that I am feeling sorry for myself or David because I am not. There are many out there dealing with things far more daunting and life threatening than we are, but I am FRUSTRATED! Notice the capitalization? In the cyber world.....all caps mean that things just got REAL serious!

If you have been reading this particular blog.....then you know our back story, so I won't waste any time going back over the past other than to say that years ago we should have been told that David needed surgery and then all of this would have been behind us and he would have had years of physical therapy (PT) behind him and possibly have been a much more independent young man and not chained to a wheel chair. Instead we were given different versions of the same answer by different orthopedists through the years....all insisting that surgery was not the way to go.

It was not until we found out about and went to Shriners Hospital in St. Louis a couple of years ago that we finally learned from the REAL experts that surgery was not only an option but necessary for Davids future quality of life and......that he should have had the surgery years earlier. FRUSTRATION!!!! As you may remember David had this necessary surgery in April of 2012. Prior to surgery his hips and knees turned in and his muscles were very tight even with a Baclofen pump releasing constant muscle relaxants. After his surgery his hips turned out and spread along with his knees. His muscle tone became much better and he could move in ways that he had never been able to before.

A year and half out from surgery the pro's of the procedure are that he has more muscle movement, the cons though are that he cannot walk because his hips have turned out too much thus he is almost hyper bow legged with his feet crossing thus making it impossible for him to stand or walk even with his walker. It has also made it very difficult for him to transition himself from floor to wheelchair or wheelchair to any place else. The fact that he is now 4'8" and weighs nearly 80 lbs does not help any of his struggles.

Yesterday we made a 1,000 mile round trip dash back to Shriners to see a new ortho as his old one is no longer there. His new doctor is the head of Orthopedics at Shriners. This also gave us a new care coordinator and a new PT. This new PT did not seem to like what she was seeing from the get go...especially not being 18 months post surgery. She asked a lot of questions and did a lot of checking which David tolerated to a point. I asked her a lot of questions which she then answered to a point but hesitated with REAL answers until the doctor came in. He was also seen by a thorough young resident prior to the doctor who also asked a lot of questions and answered a point. I was pretty impressed though that this  new team knew a great deal about David and were very up-to-date on his history. Someone was actually reading his chart!!!!! 

When the doctor came in he showed me Davids new x-rays. His spine has not curved any further.....that was the good news. The not so good news is that there is a new surgery in his future and it is not the simple little go in and take out the metal plates and screws that were put in 18 months ago and replate his right hip surgery that we had been told by his old doctor to expect No. The new surgery will be nearly the same as his last one because now his hips have been rotated out too far, so they now need to go back in and rotate them back in to some degree. This means more cutting of bone and muscle, another 6-8 hour surgery and another long recovery. I was nearly nauseous as he told me the plan. He also told me that this was Davids best chance of ever being able to stand on his own. Walking could be something else entirely as David has lost so much muscle tone from not being able to use his legs properly these last 18 months. After surgery and recovery.....he will then have to have EXTREME PT to regain as much muscle tone as possible. I truly wanted to cry.

Eighteen months ago David suffered through surgery, almost dying and a painful recovery only to be wheelchair bound. NOW he has to go through a similar surgery (hopefully sans the near death experience) another painful recovery and then we still don't know that he will be able to walk because of the loss of his muscle tone due to the first surgery. ARRRGGGGGHHHHHHHH!

Here's the deal....I am not in any manner mad at Shriners. I still know in my heart this is his best chance for a pain free future and the possibility of walking. I am however MAD AS HELL at my local ortho's who steered me away from surgery when he was young and should have had it. His life could have been completely different by now. Were they scared to do the surgery, too lazy or just too under educated to know how important this would be for David's life? I will never know the answers to this. Now though, I am stuck in OBAMACARE HELL and I have no idea what will even be covered in this new journey we are on. It doesn't matter though. What does matter is that David has all the tools he needs to have the best most independent life possible. So we wait to find out when his surgery will be.

The other good thing is that Shriner's is being extremely pro-active. Due to the fact that David aspirated last time and ended up at St. Louis Children's post surgery.....this time they are contemplating doing the surgery itself at St. Louis Children's to cut any risk to David. Another reason I know that Shriners has David's back.

As I was driving home yesterday and trying to process all of  this, I couldn't help but think about this 13 year journey we had been on. It has been a lot of no information, misinformation and frustration. It is hard to know all the missed opportunities for David just because we never knew they were there. When you have a special needs child....they don't come with instructions or directions that lead you to help resources. If you aren't vigilant as a parent and don't fight constantly for them......the system allows them to fall through the cracks. Someone truly needs to educate special needs parents so that they know how to get the best for their kids. If it hadn't been just talking to the right person at the right time.....I might never have known about Shriners and I cringe to think where we might be today. Perhaps when this next surgery is over and David is me......he WILL walk if I have anything to say about it, then I will work to start educating parents. I don't want there to be any missed chances for other kids like David and trust me......there WON'T BE if I have anything to say about it!

Prayers please as we continue on to the next  leg of our journey!

1 comment:

  1. Prayers for all of you on your continued journey.