I think my brain is on complete overload. I knew that going to Shriners Hospital would be big...but I had no idea how big or how overwhelming. If you haven't been there....then you can't comprehend the enormity of what goes on behind those humble doors or what they accomplish on a daily basis. When you approach the hospital it is neither big nor is it fancy. It modestly sits off a busy road in St. Louis. When you walk through the doors it is clean but certainly not ostentatious. You are directed into the out patient clinic where you are greeted by friendly and accommodating staff. We arrived about an hour early (not knowing for sure how traffic would be) so we were told we could have breakfast in the cafeteria. Again...nothing fancy and yet very reasonable prices and wonderful food. Once full it was time for our appointment. After a quick check in we waited about five minutes and then were called back. Once back in the clinic.....it was non stop.
David was immediately seen by a physical therapist(PT) and then an orthopedic doctor. They looked at his legs without his AFO's (braces) and watched him walk with his walker. He took off at warp speed despite the twisting of his hips and the turning of his feet and knees. We were then sent back for x-rays. They took spine x-rays and hip x-rays along with leg, knee and foot x-rays. Lucky for everyone involved David was in a cooperative mood and the x-rays went smoothly and all the techs thought David was just the cats pajamas. He saved his grumpier side for the PT.
Once back in our room David was also visited by the occupational therapist (OT) who was very pleased with his upper body strength and hand and arm mobility. She gave him a few exercises to help his dexterity a bit but overall was pleased with what she saw. Before she was even finished, the PT and the ortho doctor were back. They took me into the hall and showed me his x-rays and what they felt were his major issues and what needed to be addressed. Their main concern was his hips. Our hip joints are a ball and socket set up. The ball of the joint should fit into a secure cup like bone. Davids bone that is suppose to be cup like is actually flat and straight causing his hips to turn outward and causing awkwardness with his walking. If left untreated he will continue to become weaker in his walking and he will eventually develop so much pain he can't walk or even sit. So they want to cut into his bone thus causing it to turn in instead of out. The best mental picture I could get was if you were sewing a curve and wanted your material to curve properly then you would have to snip out pieces of material to get the desired curve. Apparently this is along the lines of what they will be doing to Davids hip bones. At the same time they will be twisting the leg bone to straighten the knees and give him full extension of his legs. This all sounded wonderful and I was excited until I asked the all important question: Will David be able to walk without a walker? I was met with at very decisive and definite...NO! I felt gut punched when I heard such a definite answer, but it was followed up with a: "He will however be able to walk better with his walker and he will not end up having future hip pain." Sigh...in this game, you take what you can get.
On asking more questions I found that the surgery would be a 4-5 hour surgery as they would do it all in one fell swoop. While most patients are in and out in a 24 hour period....David's stay is expected to be 3-5 days and will entail issues we have never had before. David has had surgeries but never any with lasting effects and residual pain. Most kids Davids age will let you know they are in pain and pretty much what level their pain is. With David it is just not that easy. He has an incredibly high threshold of pain and being non-verbal....it will be difficult for him to let us know how bad the pain is. Getting him the proper pain management could be tricky and they have let me know there will be a lot of pain. Under any circumstances I would have stayed by his side 24/7 while he was in the hospital, but with his situation the way it is....it will be even more imperative that I do.
Once surgery is complete he will be cast in a dual leg cast with a pillow between his legs to help his legs stay separated. This will mean a new wheel chair to accommodate his casts. The wheelchair must have adjustable support for his legs and recline. Also traveling the 8 hours back home could have its challenges. They said his recovery in the casts will take about 8 weeks. After that intensive PT will be required. It will be much more than the school setting will be able to provide so we will likely be making trips into Wichita for high levels of PT. There will also be numerous follow up trips to Shriners and we were advised that it would likely be a year before he was even back to baseline. By the time the consultation was over....my head was swimming. Trying to figure out time off from a job that I can't afford to take time off from, trying to figure out school, PT and working life around all of this almost gave me an anxiety attack. I was quite nearly speechless and you all know THAT never happens.
On top of all of the hip, knee, leg issues he also is developing a spine issue. The ortho wants David to see a spine specialist but the first available wasn't until mid March so we are already scheduled to come back then. I took a deep breath and told them to go ahead and schedule him for surgery. As their schedule is now.....they are booking past March so they will be calling me with an official date soon.
When I walked out I felt deflated and ecstatic all at the same time. I so wanted to hear that there was a possibility that David could beat the odds and eventually walk on his own. After all...he had already beat so many other odds, but the definitive NO! crushed me. I almost cried right there. Instead my plan once again turned into Gods plan and David and I are just along for the ride. I am scared beyond belief of the surgery and what the next few months to a year might hold. Today I even questioned if I would be capable of making it all work so that this surgery would be a success and all the pieces would fit together. I still am not sure, but I do know that this surgery is a necessity and Shriners was put into our path for a reason. I just have to have faith.
Tonight I am a bit of an emotional mess. No I am not crying....I am just mentally shot. I know I need to get from point A to point Z, but I have absolutely no idea of how I am suppose to make all the other letters fall in line. I am sure there is an answer and I hope that will a little rest that answer will come to me. It has been an amazing experience and I do feel that David will be in the best hands possible. We have been put on this path for a reason so I guess we will just have to see where it leads us.
