Shriners....Not Just a Fez and Parades

When I started writing daily in this blog about David's journey....the reasons behind it were three fold. Reason #1 was to maintain what small piece of sanity I have. Reason #2 was to keep anyone who was interested.....up on David's medical status. Finally....and this was to me....one of the biggest reasons....Reason #3....to educate on all that was going on from beginning to end. I knew that we certainly weren't the only ones who had ever gone through this, but....there wasn't a lot of information out there about this particular journey. So today...I will make this blog a little more informative. Before that though....David is doing well. I worked him like rodeo stock yesterday and today I am not his favorite person. I decided to give the young man a break and allow him some space and a whole lot of Spongebob. Tomorrow though....we will be right back at it!!! Yeehaw!

Okay....David has had cerebral palsy since birth. Other than the words....I knew nothing about CP. To be quite honest....the first couple of years....I ignored the diagnosis. I did the required having Rainbows out and having physical therapy (PT), occupational therapy (OT) and speech but lots of kids for lots of reasons had those therapy's, so you could say that I lived in a bit of denial. As David grew though and started school at 3, his physical issues could no longer be denied. I then put him in the CP clinic here in Wichita and started seeing a pediatric ortho doctor. When he was about 5, his knees began to turn in worse and worse. Someone (have no idea who...possibly a PT) told me that there were surgeries that could be done to fix his knees and his tight hamstrings and give him better mobility. When I discussed this with his ortho doc I was told that the surgery would be too hard on him and that the likelihood of it working was not great, so it was a lot of pain for the possibility of no real result. David was so tiny then and I just couldn't put him through something like that for nothing.

With really good PT David began to improve and the results were amazing. Then the school changed PT's and David began going down hill. His flexibility became worse and worse as did his mobility. A supposed professional for over 20 years was refusing him stretching and believed having him stay in a stander was all the therapy he needed. His walker time was greatly diminished and he was carted everywhere in his wheelchair. I saw him going down hill right before my eyes. When I took him to the ortho he was furious. He told me to get him out of school PT and get him into "real" PT at the hospital two times per week. Needless to say...feathers were ruffled and if you can imagine....SRS was even called on me in retaliation. Luckily the SRS social worker was not stupid and after being invited into my home during a surprise visit she left saying that she saw no case at all and would mark it down as "misinformation"! I have not forgotten then incident....nor will I ever.

After this...this PT was suppose to be out of David's life. He was going to the hospital PT and once again we were making progress. Suddenly one day David refused to have anything to do with the hospital PT. He became hysterical and screamed, hit, bit and did whatever he could to get away from her. I knew she had done nothing to him as I was always there with him. She was as shocked as I was. On returning him to school I told them that he was extremely upset and what had happened. Later that day I received a call explaining that the school PT was "overseeing" him at school and when David wasn't as compliant as she liked....she would get in his face and scream at him. This was stressing him and scaring him and he was connecting all PT with her actions. When I found out I demanded that this woman be gone. I didn't want her around him EVER again. I got our CDDO advocate involved and when the meeting was set...the PT didn't show and I was told that she had resigned(not quite the truth but that is another story for another day). I was good with that and soon David had a new and wonderful PT at school which was awesome as the hospital was not keen on him coming back after his melt down. Understandable.

With the new PT David was progressing once again, but certain things were becoming evident. Even with custom orthotics and a wonderful PT....David's hips and knees were becoming more and more of a concern. His left hip seemed to be thrown as he walked and his poor little knees continued to turn in. Despite this though....the boy could practically run in his walker. He LOVES walking....until he doesn't and then he just sits down! The PT told me to have the ortho look at his legs again this time focusing on the hips and knees. By this time I had a new pediatric ortho. I just didn't agree with much of what the old one said and did and felt we just weren't being proactive enough with David. So I was excited to go to the new ortho. This one saw David several times, watched him walk, took x-rays and told me infatically that David did NOT need surgery. She said with the orthotics and "good" PT he would be as good as he would ever be. I was confused. The PT said no more and life went on with us watching David's hip being thrown more and more and his knees turning in more and more. I honestly thought after talking to two pediatric orthopedic doctors that they knew what they were talking about.

Now in all fairness....these doctors are good doctors but what I know now is that the surgery David had is a tough one. It is done at other hospitals (maybe even here in Wichita...I don't know) but Shriners is the only hospital that has perfected it. So I am not surprised that both of these doctors backed away from the surgery. CP kids are special kids and they need special care...especially orthopedically and I just don't think Wichita has filled that need.

It is about here that David's story gets interesting. My friend Thiry had been laid off from aircraft. She was sick of aircraft and finally decided what she wanted to be when she grew up. She wanted to be an Occupational Therapist Assistant (OTA). So Thiry began her journey which started with school. Lots and lots of school. Although school kept her busy beyond belief.....every once in a great while she and her fellow students would go out and let their hair down a bit. Lucky for me....Thiry decided to invite me a long on one of these social outings. It was here that David's journey began....as I met one of Thiry's fellow OTA's. Funny enough she lived right here in our home town. Jill already knew of David as Thiry had apparently talked about him in her class. So that evening Jill and I talked quite a bit about David. A few days later Jill called me and asked if I would be interested in her dad (who was a Shriner) sponsoring David to go to Shriner's Hospital. I had no words! I mainly had no words because the only visualization of Shriners that came to my  mind at that moment were guys in tassled hats driving little cars and motor scooters in the Old Settlers parade. She went on to tell me that Shriners Hospital specialized in kids like David with CP and that maybe they could help him become more mobile. They weren't just my imagined a fez and parades...and she had me at "specialized in kids with CP"! The wheels were in motion!

Let me say here that Shriners is just not well enough known in my opinion. Of course I had heard of Shriners Hospitals....but for whatever reason....I had always associated them with kids who had been burned. I later found out that they specialize in that too! I could pick a shriners fez out in a crowd but up until Jill's quick tutorial...I had no idea what the Shriner's world was all about nor what Shriner's Hospital was capable of doing.

I also have to say here that it was at this moment that I felt something slap me upside the head and scream loudly in my brain...."Don't pass this opportunity up!!!! This is a bona fide God thing!" It had to be as it started to be like pieces of a jigsaw puzzle coming together.

So let me tell you about what happened from this point. Jill's dad brought me a request of acceptance to Shriners through his sponsorship...which I filled out. It took about 10 minutes and then he came and picked it up from me and got the ball rolling. Within a very short time someone from St. Louis Shriners Hospital called me and asked me tons of questions over the phone. They also faxed me medical releases that I signed and sent back so that they could get David's complete medical history. Going through all of that took a bit of time...but not as much as you might think. They then called me back to let me know that possibly David was not a St. Louis candidate as David has a seizure disorder and St. Louis is really not equipped for such kids. Once I explained the type and frequency of his seizures they obtained more releases to get all of his neurological information. On receiving this and talking with Dr. Shah (David's neurologist) they were comfortable with David being a patient. So finally the day came that I received the call telling me that David had an official appointment date in January. It had been about 6 months since this had all begun and we had about another 3 months to wait but it was worth it to maybe get some answers! I am sure had we not had the seizure issue the time this all transpired might have been less.

Once you have a verified appointment there are decisions to make. Can you drive yourself? Do you need transportation? Once there do you need lodging? Shriners call's you numerous times before your visit to make sure you know where you are going and what you are doing when you get there. The local Shriners (in Wichita The Midian Shrine) then jump into action. If you are driving yourself...you receive a stipened to cover some of the fuel costs. If you don't have a car or can't drive.....the Shriners have vans that will pick you up and take you. Once there....if you don't have lodging, Shriners will set you up at Haven House with little or no cost to the patient. At every turn the Shriners went the extra mile. Because of all of this, before we even began the journey, thanks to Jill....I got to meet her dad Jack, her mom Linda and the lovely lady at the Midian Shrine...Judy! All have been wonderful!

We drove to Shriners on our first visit. My mother in law lives less than an hour away so her house was our lodging and we were able to make our trip multi-purpose. We had our appointment and got to see family too. Upon our visit....like I said in a much earlier blog....I knew we were in a good place. Shriners St. Louis is not a fancy place but it is a comfortable place and from beginning to end you feel as if the staff is truly invested in each and every child that walks through those doors. The first time you are there...it is reminiscent of the CP clinics in Wichita. The difference is....there is no down time and no waiting. From the moment we checked in we had about a five minute wait before we were ushered to the back. In the four hour visit we saw PT, OT, had x-rays and saw the ortho doctor Dr. Keeler. Never did we have to wait for the next one to come in and when we were sent off to x-ray to have a multitude taken....the results were back to the doctor before we were even back to the room. They obviously know the cardinal rule CP KIDS DON'T LIKE TO WAIT!!!!! The very fast paced setting kept David occupied and interested so we didn't have any escape attempts by walker or wheelchair. We were also given the opportunity to sample the hospital cuisine in the cafeteria. Again...nothing fancy....but very delicious and very reasonably priced.

By the time David had been seen by everyone, the x-rays were back and Dr. Keeler was giving me her opinion of Davids prognosis with and without surgery....I was sold. I really didn't know I was sold....but I was. Dr. Keeler I don't think is very old. Maybe in her early 30's. She is all business and pulls no punches. She is not touchy feely and she doesn't say what is easiest for her...nor just what you as a parent want to hear. She lays it all on the line. I appreciated this. When she told me that they would have to turn his hip bones in and put a plate in his left hip, turn his knees out and put four plates around each knee and then cut his femors to help his hamstrings....I could feel a sense of sinking hit me. She also followed this up with...."it is a very painful recovery!" The first words from my mouth were, "will he be able to walk without a walker?" Her answer was a definitive..."No!" But she followed it up with the fact that he would be extremely proficient on the walker and much more independent. The prognosis without the surgery would be that his hips would degenerate to the point that he would be in constant pain and eventually not be able to walk because of the pain, nor ever be comfortable sitting or standing. With all the information on the table...the choice was mine. She said she would let me think about it and to let the hospital know what I wanted to do after I decided. Before I even knew what was coming out of my mouth...I had grabbed her arm and said "We're going to do it!" Remember that God thing I told you about? Yeah...cause I have no idea that I had already decided.

I pretty much spent the rest of the day feeling as if my heart was in my stomach. I knew I had just put in motion something that was going to change our lives forever.....especially since after going to two doctors in Wichita and being told that surgery really wasn't an option/necessary I was sort of expecting a similar prognosis from Dr. Keeler. Boy was I in over my head!!! Funny thing too....she said that David should have had this surgery when he was four! Yeee gads!!! I never wanted to kick two doctors so badly in all my life! Why hadn't I known about Shriners seven years ago????

Once home we waited for a call from Shriners setting us up with a hospital date. Within the week we had one. It was April 11th. That same day I found out that I no longer had a job. Darn this economy. I was stunned but not the least bit upset. Something told me things would be okay and for the first time I think in my entire life....I was quite aware that I was NOT in charge. Heck...I obviously didn't even have a say as to the direction our lives were headed in. Kind of a weird place for a self-proclaimed control freak to find herself in!!!!

It turned out to be an extreme blessing that I was unemployed because the next few months I never worked harder in my life. Cheesecakes for David was the brainchild of mine that I thought up after someone said they wanted to do a benefit for us. I couldn't get my head around people just giving us money for no reason...but I was okay with them paying for a product. Cheesecakes for David took off beyond my wildest expectations and I was up to my eyeballs in cream cheese and sugar. In between times I was in constant touch with Shriners Hospital as well as the Midian here in Wichita. I had talked to a couple of people who had been down this road and who encouraged me on the way. Everyone with experience had told me that the journey was a difficult one but the destination was well worth the journey. I prayed they were right.

Originally we had been told that David would likely be casted after his surgery and that his legs would be fragile. That mixed with all the pain he would be feeling had me nervous. How was I going to get this poor child home in my van? I just knew he could not withstand an 8 hour trip in his condition. It was at this time I started checking and sure enough....Shriner's has an answer for everything. Between Judy at Midian and April at St. Louis and a new player named Sandy....before I knew it, our problem was solved. For cases such as David's, Shriners uses a group out of St. Louis (actually out of Chesterfield I believe) called Wings of Hope. Wings of Hope was set up to fly us to and from St. Louis so that David could fly home as comfortably as possible. Along with my constant communication with Midian and St. Louis, I was also talking pretty frequently with Sandy at Wings.

Now here is a little FYI for anyone whose child is about to undergo this surgery or a similar surgery at Shriners. As soon as you can, before the surgery....start getting things into place. Things you will likely need will be a special wheelchair, possibly a hospital bed and there is also a good chance you will need some kind of home health care and also PT. All of these things have got to be okayed by your insurance company and the doctors have to write scripts for all of them. A heads up on this is that the wording on those scripts has to be just so so or the insurance company finds it extremely easy to deny them. Shriners Hospital provides you with a personal social worker and the whole time David was there she was trying her darndest to get things in place with insurance denial after insurance denial. The only thing insurance readily accepted was for the wheelchair. Our little social worker even worked it so that we could get the chair through a Wichita company and have it delivered before we got home. As for the bed, the home healthcare and the PT....I had started working on those before Davids surgery with our advocate through the CDDO. With no luck before we left I was hoping things would work out while we were there. Our little social worker tried but no cigar. To the rescue....the Midian Shrine and their wonderful Judy stepped in. I knew that we could not bring David home without a hospital bed and not only did she get us a hospital bed, but bedding too. It was here when we got home so all we had to do was bring David in and put him in it! Home healthcare is still a bit elusive but I think I have found some ways around it....and David is actually getting to the point that we really aren't going to need it. PT will be our next hurdle and that will come after his next visit.

Once Wings of Hope flew us to St. Louis, Shriners had us set up in Haven House. It was a beautiful, comfortable place that we stayed at the two days prior to our check in at Shriners Hospital. When we checked in at the hospital....once again I was so impressed. Everything was so efficient and every doctor, resident and nurse introduced themselves and let us know what part they would play in David's surgery and recovery. Hearing the actual names for David's surgery's made me a bit queasy "Bilateral Verus Osteotomy", "Left Bega Procedure" and "Bilateral Adductor Tenatomy"....but I was assured time and again that Shriners were beyond experts in these surgery's. Even our own doctors here in Wichita confirmed this.

During surgery (five hours worth) we were called hourly in the waiting room with updates. After the surgery David was taken care of in the post op recovery over night. It was one on one nursing care where at least one and sometimes two nurses were at his side all night. When moved to the floor, the nurses were attentive and right outside the door at all times. The rooms were in a circle around the nurses station and a nurse could always see in the room. Along with patient care....Shriners also practices parent care which is a necessity since some of the kids are there for weeks at a time. Parents can stay in the rooms with the kids and there is laundry and parent rooms on site also.

When the Shriners staff realized that David was going into crisis (*****this had nothing to do with his surgery*****) and they knew he needed care that they couldn't facilitate.....they immediately had him taken by ambulance to St. Louis Children's. I will be forever grateful to Shriners for making that call and keeping egos out of it. With their watchful eye and amazing care....they saw to it that David was given the absolute best care possible both in and out of their hospital.

Even while we finished our stay at St. Louis Children's, Shriners called to check up daily. I heard from out little social worker Kimberly, Sandy from Wings and also April our care coordinator. I also hear from Judy at Midian who worked tirelessly to make sure that everything was ready for us when we got home. She even made sure that David would be picked up from the airport in Wichita by ambulance so that his vitals could be monitored and his trip to our house would be comfortable. It was amazing!

Now that we are home and I have had time to process this who leg of our journey....I have to say that it has been an impressive ride. Yes...there have been hitches and scares....none of them having a thing to do with Shriners Hospital or the care we got there and my hair is a little grayer now than it was when we started, but if I had to do it all over again....I would in a heartbeat. We are scheduled to go back May 25th (we will be driving this time) and I know that we will have many more trips to St. Louis in our future. I am good with this because I have seen from start to finish that Shriners truly do care and Shriners Hospital is an amazing place. Thank you all for all you did!!!!

If you have a child like David with CP or ortho problems and you think Shriners might be able to help them....find yourself a Shriner and get your child sponsored. Can't find a Shriner? Contact me and I will help you or you can call your local Shrine or Shriners Hospital directly. Your child....like mine deserves the chance to be as mobile and independent as possible and you and Shriners can give them that...so give them a call today! Shriners Hospital St. Louis!