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!

Post Op, Pollen and PT

Okay...so I intended to post sooner than this, but life got in the way. Sounds good....right? Maybe the truth is...I just haven't felt up to posting on this blog. It stirs many emotions when I post here and I have to be in the proper mind set. So where do I begin?

I believe when last I left you....we were headed to MO to visit family and to do our post surgery check up at Shriners. This was a really tough appointment for me as I had so little training after his surgery and I spent a great deal of time worrying that I was doing it all wrong. In fact I think it is pretty safe to say that since David's surgery....I have had almost no complete nights of sleep. Most have been laced with David sitting up and bending forward, whimpering in pain or when he wasn't doing anything....me lying awake....fearing I was doing it all wrong and wondering what I had gotten us all into.

The journey of getting us from David's surgery to this point in retrospect has gone fairly quickly, but in real time....the days were not exactly fun filled. As I had posted there were days when David screamed when I came into the room and I wanted to sit down and bawl myself because we both knew that I was going to be doing something (PT, diaper change or tummy time) that was going to cause him pain. Then we went from real pain to anticipated pain which was almost worse because he would tighten up so much in anticipation of pain that he would cause himself unnecessary pain. David in pain is not a pretty thing. He tends to lash out with a great deal of hair pulling, pinching and even at times biting. A ten minute physical therapy session can often make me feel as if I have been through a very unpleasant battle...complete with the scars to prove it. For the most part though....we simply adjusted our old norm to our new norm and moved along. Still I worried though and panicked time and time again when things didn't seem right or look right to me.....especially when I wasn't even sure what right was at this point. My greatest fear was to go back to Shriners and have them tell me that he hadn't healed properly or that I had done something wrong out of sheer ignorance. That six weeks was truly a hell all on its own.

It didn't help much when just before we were set to leave one of the scars on his knee became infected looking. It is such a catch 22 situation. They tell you to get back to a normal life as soon as possible, but in doing so you run the risk of infection, injury or the parent (me) having a nervous breakdown. I wanted to take David and put him into a bubble and keep him safely tucked away there....but realistically his recovery is a long and slow process and I simply can't hover and make him, myself and all in my hemisphere crazy for the duration of all of this, so I had to do the next best thing. I had to have some faith in myself as a mother. In my world...that is easier said than done.

The trip to MO I decided would be done in two separate legs. Eight hours is a long way to travel under the best of circumstances. When your legs and hips hurt though.....well I just wasn't sure that would work. The first leg of the trip was about 4 hours. We traveled to Columbia and stayed with my aunt and uncle. We had a lovely time and this was where David showed for the first time....his determination in the whole recovery process. He and I were sitting on the front porch in a swing visiting. Suddenly he decided he wanted to get down. I tried to talk him out of it....but he was determined. I put a kindergarten nap mat down and helped when I could as he wiggled himself off the swing and onto the mat...onto his knees. It was at this point that he realized his knees were not the same as they used to be. He let out a yell that could have been heard clear back to KS. I tried to pull him back up into the swing but he was having none of it. He pulled away from me....whimpered and then tried to push himself completely up on his hands and knees. After several tries and several attempts from me to rescue him from his determination and pain....he finally succeeded in balancing on his hands and knees. Once he had achieved his goal, he was then ready to be lifted back onto the swing. It was here that I realized that David....even in his fragile state.....was far stronger and far more determined than even I knew. Perhaps he was setting the stage for what is to come. We shall have to see.

Day two of our trip took us the last four hours to my mother in laws. Although we broke the trip up for his comfort....riding did not seem to bother him in the least. Once there we had to figure out how best to accommodate David. At home he was used to his hospital bed and wheel chair but now we were faced with no hospital bed and quite honestly....I had not really thought sleeping arrangements or even existing arrangements through. All was well though. He was ready to be on the floor and he did fine. In fact it was in no time at all that he learned to manipulate himself around on his tush sliding from room to room. God bless my mother in laws wooden floors. David had a great time and I am sure it did him a lot of good to see faces on a daily basis that weren't mine.

Something apparently happened to both boys and I as we crossed the state line. Suddenly we all began sneezing, coughing and everything that could run....did! I exasperated my own situation by taking advantage of having extra eyes on David and going walking. It is pretty rural there and along the roads everything is in bloom. Apparently that "everything" includes but is not limited to; mold, pollen, ragweed and many other exotic and allergy causing species. I spent the whole time there feeling as if my head would explode. My eyes and nose ran continuously and I switched between coughing and sneezing every night. I am sure I was a pretty horrific mess the entire time I was there. Add to that my good humor because I felt lousy and I am sure I was the life of the party.

On the day of David's appointment to Shriners....my mother in law once again drove. Bless her as I am not a fan of St. Louis traffic and my sister in law came along for the ride. Our appointment was at 10 a.m. and as usual we were taken back immediately. First we were ushered off to x-ray where David not so patiently withstood numerous painfully positioned pictures. Afterwards we were taken to our room where we were once again seen immediately by the Nurse Practitioner and then the PT. After answering all the questions we were suddenly left alone in the room. Ten thirty turned into eleven thirty and soon we were headed into noon and we had yet to see Dr. Keeler. Our patient representative came in and apologized telling us that the doctor was stuck at another hospital doing surgery on a trauma patient. Hearing that and knowing how lucky I was to have David....I could easily forgive the wait. I did however feel very badly for my mother and sister in law who were having to suffer through the wait with us. After taking time for lunch and coming back to the room...there was still no doctor. My mother and sister in law had another stop to make in the city and I sent them on their way. I figured there was no reason for them to have to sit there with us. Finally at about 2:30 Dr. Keeler arrived. I couldn't have been more impressed than when she stopped and went to each patients room and made her apologies before she started making the rounds. She really had nothing to apologize for....and yet she did. Now that is an impressive doctor!!! When she made it to our room...she walked in smiling. David's x-rays showed that his bones have healed beautifully. He was given no restrictions and told to start PT full on. Yay!!!! He was fitted for new braces and given temporary ones and they made him stand with his walker for the first time since before surgery. Of course his legs buckled as he has zero muscle. They also decided that he needed knee supports too...so now he has braces and supports along with still sleeping in his knee braces at night. Dr. Keeler also said..."Get him in the pool! That is the best exercise/therapy he can do!" (Hopefully by Tuesday that will be a possibility...but that is another story for another day!) We didn't end up leaving Shriners until around 4 p.m. and trust me it was a REALLY long day for all involved....but a day that let me know I had done it right and that David was on the way to a full recovery.

The rest of our trip was spent with family. We had a fish fry, learned some new games and had some of the absolute best homemade ice cream I had ever tasted. All in all it was a very positive trip. One we have to make again in about 3 weeks to pick up his new braces and check the progress of his PT. At this point I can pretty much just say the words St. Louis and my car knows the way.

Once home we had to deal with another issue. I think I might have mentioned a while back about one of David's testicles shrinking/disappearing. Well over the last couple of weeks it has gotten much worse so I made an appointment with the pediatrician. He said he didn't think it was necessarily anything to worry about, but he wanted a urologist to see him just to be on the safe side. So Friday we saw the urologist. It was another day of long waits and tests. We found out that yes he has a testicle issue. It is not dead as there is still blood flow and the cause could be one of several things. One could be the fact that when he was in the NICU he had a testicular hernia where they used mesh to fix it. The mesh could have caused a restriction in blood flow causing the shrinkage. Another reason could be a testicular torsion which is suppose to be extremely painful but can cause the same outcome. Finally....it could have been a cutting off of blood flow during surgery. Whatever the case though....he is fine and it will just be something else they watch in the coming years. Another hurdle cleared....and we move on.

Along with our next trip to Shriners and extreme PT, this month we will also see the neurological surgeon to talk to him about putting in the (I can't remember the name of it) but it is the device that fits under the chest wall to help circumvent seizures. If this works....David will not need to be on all the seizure meds he is on and we will no longer have to deal with all of the med side effects either. We are thinking that surgery will likely be in July. I am also sure there will be further trips to Shriners before the summer is out too.

Since we have been home...I still feel pretty bad. This allergy season has hit me hard and because of it, it is makes it a bit difficult to see things with a perky outlook. That being said though....I can't possibly sneeze forever....so soon I should be able to see the world without a headache, but through it all....I have never once forgot how blessed we are to have come this far. The day Shriners was introduced into our lives was one I will never forget and will always be grateful for. Because of Shriners....David may really walk!