Broken Ankle, VNS, Delays and Such.......

My how time slips by. It seems that it was such a short time ago that I was anxiously awaiting our first trip to Shriners Hospital in St. Louis, and now we are well over 12 weeks since the big surgery occurred.  Life has taken many a twist and turn in the last 6 months and there have been many  times when I have second guessed myself or questioned whether the path "I" chose for my son would have been a path he himself would choose if the decision had been his to make? In hindsight....I would say that even with all we have been through and all the information we have gathered and learned since January....I would not hesitate to do it all again.I could definitely skip over the aspirative pneumonia and the self inflicted broken foot....but other than that...... although trying and at times scary.....this journey so far has been a good one.

Did I forget to mention the broken foot? Maybe I did...and in case I did.....the abridged version (as if I can actually condense a story into a short few words) is......about three and half weeks ago...David's right ankle and lower leg began to swell. Knowing that sometimes after surgery (especially when the person is not very mobile) that a blood clot can occur and after conferring with several healthcare professionals who are friends and his doctor.....it was decided (okay....the doctor and I decided) that David needed to go to the ER. Visions of a fresh hell where I once again had to worry whether he was going to make it or suddenly be ripped away from me by yet another freakish situation were all I could think of as I broke land speed records to the hospital. After the usual blood work, x-rays and the dreaded Spongebob Movie......we learned that we were not dealing with a blood clot, but merely a hairline fracture on his ankle bone. WHAT????? Relief along with a sudden understanding of just how this could happen flooded my every pore. David bent his own foot to the point that the bone cracked. I knew just when he did it too. It was during the previous night when I heard him let out a war hoop that set me straight up in bed. At the time....I thought he had just moved badly...but since he grabbed his feet and toes all the time....I knew he had to have pulled it too hard and caused the break. The ER doctor said this was fairly common in kids like David who have undergone this type of surgery. Suddenly they can move in ways they never could before and often hyper extend or in David's case bend their feet until they break. More information that it might have been nice to know ahead of time. Yep....all part of the learning experience.

After the break David was 3 weeks in a boot. Just so happens that because they had to make new orthotics for us at Shriners....they put him in boots as orthotics until his new ones were ready. Luckily that is what they would have put him in for his fractured ankle anyway.....so we were good to go. After the three weeks his ankle seems to have healed okay and we have started the more hard core physical therapy (PT) in which straight legs and weight bearing are the main focus and goal and none of this makes him very happy. The upside is.......that a crucial part of his PT is done in the pool and since David loves the pool more than he loves anyone or anything right now.....this makes all our lives a little easier. Here is where I am going to tell anyone who is thinking about this surgery for their child to understand that the PT part of this journey is the hardest and will cause both you and your child both physical and emotional pain. Those muscles have been cut and mended along with having metal plates in the hips and knees. It hurts to bend the legs and it hurts to straighten them. There is apparently no such thing as a comfortable position and the only thing that even remotely seems to help the pain is to wear the thigh to ankle stabilizers that are hot, a bit itchy and a royal pain to put on. They also tend to cause bruising at the thigh and ankle and rub marks up and down the metal stabilizer strip. They also add about 5-10 lbs to his overall weight and getting him from place to place is not especially fun. Whatever works though....right? The PT (at least in our situation) can cause even more pain than he already has which in turn causes him to lash out (hair pulling, pinching and the occasional decision to take a pretty healthy bite out of whomever is closest). It makes for an extremely tense and exhaustive hour to hour and a half and by the time PT is over.....everyone involved needs a nap! Again though....going with the upside....it all seems to be working and every once in a while we get brief glimses that David is not fighting the PT as much. Although the all out wars with David to get through PT are anything but fun....watching him scream and cry because of real pain or the anticipation of pain is heart wrenching beyond belief and has caused me more than a few tears of my own. I just have to keep telling both him and myself that there will be a light at the end of this long, long tunnel and hopefully someday David will walk making every second of this process worth it!

Again,.....focusing on the positives.....this whole journey has had some very positive effects above and beyond what it has done for David. As a family it has brought us so much closer together and opened my eyes to just how fast time is moving and how much I want to accomplish as a family before Z graduates and steps out into the world. We have done more, laughed more and grown closer as a family unit than we have ever been. I have learned so much about Z and seen him for the young man  that he is turning into. He truly is amazing. I have also watched David change. In some ways this surgery has matured him and though always laid back....now he seems to take just about anything (other than PT) in striide.......and watching his interactions with other kids is tryly amazing.

I too have grown and yes......even matured through this process. I was met head on with my future in a family incident a while back and I realized that that was not who or what I wanted to turn into. Believe me....I made some changes pretty darn quick and almost immediately I saw a change in the world and people around me. Honestly though....none of this would have come to pass if not for Shriner's Hospital giving David the opportunity to walk!

Our latest hurdle or in this case.....non-hurdle has been the fact that David is to get a Vagal Nerve Stimulator or VNS. What this is....is a little device implanted in his chest wall with a little wire with a corkscrew or pig tail end. It wraps around the Vagal nerve without actually disrupting or damaging the nerve. The purpose of this is to basically stop or over ride seizure activity. It sends a charge every time seizure activity is detected and can stop it in its tracks. If however a seizure starts to sneak through....the seizures can be stopped manually by a small magnet being run over the outside of his chest. The hope is that with this VNS that we can both stop his seizures and lessen his medication requirements for seizures. Currently David is on five different medications in differing doses throughout the day to control his seizures. Seizure meds although helping the seizures have awful side effects such as sedation and aggression which in turn can cause the need for more meds to try and counter act those side effects. The counter acting meds in turn have negative side effects of their own which ultimately means more meds and more side effects. It is exhaustive....so hopefully the VNS will help us to cut back on the meds and the side effects and maybe even one day make him both seizure and med free. What a glorious day that would be!!!! At any rate....the surgery to attach the VNS is a one day surgery where we would be in and out. However.....the recovery rate (I am referring to non-pool time recovery) is about 3-4 weeks post surgery. I didn't know this (or let us be more accurate and say....think about this) before scheduling his surgery for next Friday. Suddenly though as we were out in the pool and fighting to get David to kick his legs....it dawned on me that David would lose tremendous pool PT time if he has this surgery next week. Arrrrgggghhhhh! I really wanted this to be out of the way before school started, but not at the risk of losing precious PT time. So we rescheduled. Now surgery will be right after school starts and he will only miss a day....two at the most. Yep...and this is how it goes in our world.

The final blip, change or whatever you want to call it...in this journey has been appointment changes. We were originally scheduled for a followup at Shriners for June 22nd. At this point they wanted David to be standing with his walker and also at this time he would get his new orthotics. However, about 2.5 weeks ago we got a letter in the mail telling us our appointment had been changed to July 27th. I contemplated making the trip anyway to get his orthotics but after calling I found that the orthotics would not be ready until the 27th either. It worked out well though being that David broke his ankle and was no where near being able to stand with his walker yet. Hopefully this extra month will buy us some time and help David be a little more proficient in his PT and with his weight bearing. So basically....all is good.

I know that by now I sound like a broken record....but I just can't thank everyone enough who has helped us to get to this point. Shriners is amazing as are the people (Jill Cook and the Broyles) who introduced me to this wonderful place. If you have a child or know of a child who like my David....wants to walk, please please contact your nearest Shrine or call Shriner's Hospital directly and put that child on the road to a world of endless possibilities. I promise you that you will never be sorry you made that call!