The Journey Continues.....

Well...the wheels are in motion! So much has happened in the last two weeks.....I can't even fathom it all. I was laid off and I went into full tilt baking. I started Cheesecakes for David and the out pouring of support and generosity has been amazing. I have been knee deep in cream cheese ever since....and I love it!

We are just six weeks and three days from the big surgery day and it seems as if time is racing at break neck speed. There is still so much that I have to do to prepare, but it all does appear to be falling into place. People have been very kind giving me pointers and tips for making David's recovery an easier one.

It appears also that I had my surgery names confused. After talking to Shriners the other day and asking them more specifics (now that I know more of what to ask) they told me that David will be having the following: Bilateral Verus Rotational Osteotomie, Left Bega Procedure, Bilateral Adductor Tentotomy, and 8 plates put around his knees. It sounds painful just looking at the words. However....the words mean only one thing to me.....David having a chance at independence.

As I was saying...people are giving me great advice about what to expect after surgery and also tips that will make surgery and post surgery easier on David. One tip which I thought was really a great idea was to buzz Davids hair as short as possible. When he is in his cast and in pain...the last thing he will want is his head washed and the logistics of being able to do it even on a good day could cause water to drip into his casts....making it a bad experience all the way around. Having a buzz cut though....all I will have to do is take a wash cloth and go over his hair. How easy will that be? I have also been told that distractions are a MUST! Anything that I can do to keep his mind focused on something other than his pain, his casts and his inability to move around I need to do. I am going for Spongebob! Spongebob gives David great joy and I plan on taking his SB movies up when he has surgery and then I am going to deck out his recovery room at home in Spongebob. By the time this is over.....maybe even David will be Spongebobed out!

I have also been doing a lot of communicating with Shriners. Again I have to say....I have never had such an experience with a health care provider...and trust me....I have been involved with many health care providers. They have called me several times just checking in and making sure we are prepared and I have had to call them several times to ask questions. Always I am given complete and personable attention and they don't get off the phone until all my questions are answered. It is amazing. No....Shriners is amazing!!!!

After getting home from Shriners and thinking about Davids surgery a bit....I got to worrying about Davids trip home after surgery. Eight hours is a very long time to be in the car when you are in pain. I was really afraid that it would be too much for him. Then a friend told me that Shriners could fly patients in and out of St. Louis if there was a need. I immediately got on the phone and started finding out if this were possible and blessedly....it is! It looks like they will be flying us to St. Louis the day before his surgery and flying us home afterwords. When they fly us back....he will have a nurse flying with us. My prayers were answered. Thank you again Shriners.

Another issue I was facing was getting a hospital bed for his recovery. I had been told by someone who had been through this that a hospital bed was another MUST! I have always said I have the worlds best facebook friends and I stand by that. One of my friends asked me to call him. He himself has had health issues and he had a contact with Hil Rom who makes hospital beds. He called his contact who gave him the name of another contact. He called her and told her Davids story and she said she could help and to have me call her. I did and she said that David would have a hospital bed. Again...complete relief and Roy, I hope you know how much that meant to us.

I am working with Rainbows in hopes that we can get some kind of home healthcare after David comes home. I have been told that anything I do with David from changing him to moving him so that he doesn't get bed sores, will be a two person job. This means I will need help. Rainbows and Shriners has both told me that home health care will be limited to just a few hours (maybe 4-6) per week. That is all the insurance will cover. I am thinking this is going to mean I am going to have to bulk up a bit in the next 6 weeks in order to be able to do some of this on my own. This right here is a bit daunting....but I am sure we will find a way.

I have talked to a physical therapist who I think might be willing to work with David along with a message therapist who will work with him after his casts come off. Apparently charlie horses are the norm after the casts come off and they can come and go for several weeks.

So as you can see....there is much to do and much to get accomplished in the next few weeks. The bottom line is....if I was still working....I never would be able to get all of this done so I guess losing my job was a blessing. And as they say....when God closes a door...He opens a window! Well He appears to have opened a huge window for us and I am more grateful than I have ever been.

The journey continues and I hope to be able to be a little more faithful with my posts. We just ask for continued good thoughts and prayers. Thank you all!

The Decision is....David Wants to Walk!

Well....it has been a little over a week since our visit to Shriners and if you read my last post you know that I was on massive overload after our visit. It was a lot of information to process when the reality was that I thought they would say they were going to cast him. I was going on the information that I had been given from two orthopedic doctors in Wichita for the last eleven years. All I have heard is David's legs are doing good and he just needs more Physical Therapy (PT). As a mom....who sees David on a daily basis....I could see the gradual progression of his knees turning in and his hips being thrown to the side each time he walked. I felt as if there was more going on than I was being told....BUT when you ask explicitly over and over again...professionals who are suppose to know what they are talking about and have your childs best interest at heart, you want to believe what you hear. I even asked one ortho when David was about six, if surgery was possible. I was told that surgery was a no-no (his words) as the surgery would be too difficult on him and there were no guarantees that it would work. Now I hear that by all rights David should have had this surgery when he was about four. I am to say the least....a bit frustrated!

After the initial shock wore off of what I was told at Shriner's, my mind was for the most part already made up. My whole goal of going to Shriner's was to give David his best opportunity to walk or at the very least be the most independent he could be. If the surgery is necessary to achieve these goals...then we will do it. First I wanted to speak to some people who had already gone through it and then I wanted to talk to his pediatrician and his neurologist. I figured I had some time since they had not as yet set a surgery date. Before I was even home....after posting my blog and also posting on facebook....I had numerous people start contacting me about their experience with this surgery and Shriner's in general. Apparently everyone on the planet knew about Shriners but me. How had I lived all these years and only thought Shriner's had circuses and marched in parades? How had I not known about their work with kids like David and that David should have been there long ago? I was flabbergasted!

The people who contacted me were all familiar with this surgery and either their children or grand children had had it. All let me know that while the surgery was painful and the recovery was no picnic either.....that the outcome would be worth it all. I was also given many hints and ideas how to make the recovery easier on all of us and how to make Davids pain managable. I was overwhelmed and so grateful for the many responses. These kinds of things are always so much easier when you have someone to talk to who has been there and come out the other side still in tact. After gathering this info I immediately put a call into both the pediatrician and the neurologist. On telling them about our visit and the proposed surgery....both felt that it would be beneficial and that David was more than capable of having the surgery. The pediatrician even took it one step further and said: "If Shriner's thinks David needs the surgery and will benefit from it....then do it. They would not propose the surgery if they were not 100% sure that this was in David's best interest." With that information....the decision was solidified in my mind. After all....David wants to walk and I will move heaven and earth to help him achieve that goal!

Monday I was called by Shriner's and told David has a date. He will be having surgery on April 11th. Part of me is very excited as I see a new chapter in David's life about to unfold and it appears that there is no end to the possibilities in store for my child. Part of me though...is scared. I have been told that this surgery is extremely painful and while most of the patients are in and out of Shriner's post surgery within 24 hours....David will likely be there 3-5 days mostly I think....to ensure his pain is under control. He will be in a horseshoe type cast that will encompass both legs and from what I understand...stablizing the hips will be a necessity. He will have to have a completely different wheelchair so that he can recline a bit and so that his legs will be supported. My biggest worry now is getting him from St. Louis to home. Eight hours in a bumpy car while you are in pain is no fun. It is times like this it would be nice to be rich and be able to charter a plane. Unfortunately.....a van ride with lots of stops is the best I can do.

Once home....David's world will be completely different. Currently David sleeps upstairs and manages the stairs like a pro...on his knees. His upstairs room will be off limits for many months to come, so we will move his room downstairs. I have been told that a regular bed is neither easy to manage nor comfortable, so I am looking to rent a hospital bed that will support both his upper and lower body. I am also looking for one of those blow up mattresses like an Aero bed as I will be sleeping in his room until he is mobile again. I have also been told that I HAVE to have help as I will not be able to take care of David alone (especially when Z is in school) without possibly hurting him. Everything from diaper changes to adjusting him so he doesn't get bed sores is at least a two person job.

While all of this is somewhat daunting to think about....the thing that frightens me the most is David's pain. David has an extreme threshold for pain. His only reaction to pain is often hitting, pinching or biting. However....if you hold his hands.....he  just gets stone faced and you have no idea what he is really feeling. I recently saw him catheterized for a urine sample (catheters hurt) and he didn't budge. This begged the question...if David is weak after surgery...I mean too weak to fight....I may not know his pain levels. I do not want David to suffer unnecessarily so I have been asking doctors and researching how to tell if someone is in pain when they aren't letting you know. The best I can tell is to just keep an eye on their blood pressure and heart rate. Yay!!! I get to go back to watching monitors again!!!! Hopefully though...by the time we leave the hospital, I will be able to tell just by looking at him if he is in pain. Or who knows.....he may just surprise me and scream like a banshee when he is in pain. Only time will tell.

There is so much coming up in 2012 that I never expected. I am hoping that it turns out to be a miraculous year for David. Before the surgery, we have to go back to St. Louis in March to see the spine doctor. This could be another surgery somewhere down the road, but for now we are taking one step at a time. All I know for sure is.....by the time all is said and done, I will know the way to St. Louis very well.

I want to publicly thank Shriner's Hospital and their staff in St. Louis for their kindness and their professionalism on our visit. I want to thank all who have contacted me to share their stories of Shriner's and their suggestions to make the process much easier for David. Finally....I want to thank Jill Cook for telling her dad (who is a Shriner at the Midian Shrine in Wichita) about David,  Jack Broyles (Jill's dad) for getting me the information and the request for Shriner's and Linda Broyles (Jack's wife and Jill's mom) for putting me in contact with people who had already experienced Shriner's. Without all these people.....David would not be on the road to a new life. I thank you all from the bottom of my heart!