I See the Light

Well, I am feeling a bit out of sorts today. Perhaps it is the fact that the outdoors is both lying to me and teasing me. It is beautifully sunny but still pretty chilly. I can deal with chilly but the sun is directing me towards spring, when the reality is that come Sunday there will be snow and the high will be 15! Have I mentioned that I am so over winter????

I haven't posted in a few days because there has been little change to the situation. Well, that is not exactly true. We did actually make it through a weekend without ambulances, ER's or hospital contact of any kind. I will admit though, that when Friday rolled around my heart dropped into my stomach and pretty much remained there until Monday morning when I finally actually breathed.

After much thought and deliberation, I made a "Mom" decision which was really difficult for me. I am usually fighting to get David back into the swing of things and get back to whatever passes as normal as soon as possible. However, perhaps I have rushed it this time. Every time we try to have home bound school, it lasts a day and then something happens. Since Davids surgery we have had the flu, pink eye and various other forms of disgusting gastro intestinal things going through this house. I have cleaned until clorox and lysol have burned through my sinuses and now they are all that I can smell. Still he has gone from normal to critical three times since Jan. 1st. Because of all of this I decided that until after Spring Break, I am basically quarantining him. There is so much going through the schools right now....strep being the top of the list and we don't need strep......so I am keeping everyone a way. Even if someones immunity is great and they don't get sick, they can certainly carry it right into the house and expose David. This also means that when Z steps in the house after school he has to take a Silkwood inspired shower before he comes close to his brother. Because of all of this, instead of having normal home bound school services, we are working to possibly have Skype school where we Skype with his para, teachers and therapists and that way he is part of the class once again. It will only be until after Spring Break and hopefully by then his immunity will be better, the weather will be warmer and winter disease will be heading out the door. I am keeping my fingers crossed that this all works out because we are in desperate search of a new normal around here right now.

Yesterday brought us signs that we are indeed moving forward and that there are new and exciting things to look forward to in the future. First of all Davids casting date was set. He will go back into the hospital (out patient only.....hopefully) on March 13th. They are going to put him out so that they can remove the cast-like splint, check the bone so far and then actually cast him in a real cast this time. He should be in the cast for about 3 weeks and hopefully by then we will have a leg that is ready for physical therapy. Since we learned of his soft bones, I have been shoving calcium into his body anyway I can get it there.....foods, vitamins and TUMS! Then I have to keep his system flushed with water because calcium can cause kidney stones. Not wanting to trade one issue for another, I am pouring into him about 72 oz of water a day. This results in as much "out put" if not more than goes in. This means changing him at least 10 times a day in order to keep his splint clean and dry. Sadly it is not as easy as it sounds and according to Z.....his splint is not smelling all that pretty these days. Luckily at this point.....all I can still smell is clorox and lysol! Glad the splint removal is close at hand.

Along with the news of splint removal yesterday, I also talked at length to my step son. Him and his wonderful fiance will be getting married on June 7th and they have asked Z to sing at their wedding. I can't tell you what a light at the end of the tunnel this felt like to me. It seems like a workable goal that we can actually achieve. Of course Z is very excited to be singing at his first wedding. The fact that it is his brothers just makes it all the more special. Hopefully by that time splints, casts and soft bones will all be in our rear view mirror and we will be full speed ahead on standing, walking and all the other stuff that goes with PT. I can only imagine warm temperatures, ease of movement (no EMS necessary) and seeing my bonus kids that I don't get to see all that often. Finally.....something to brighten the winter months! I think we can actually see the light!

So onward and upward we go. Today, now that I have a cast date and an approximate removal date, I can move forward and reschedule appointments for David that I have had to cancel due to all that has been going on. He has to see the eye specialist, hearing specialist, neurologist and pediatrician along with appointments to be tentatively made for the casting of new orthotics and another fight with the mobility people to see about getting him a more appropriate and better fitting wheel chair for his post casting needs. So you see...it takes a great deal to keep a David in good shape. Lucky for him.....he is worth it all!

Going Home Today

It is truly amazing what more than two hours sleep in four days can do for you! I actually slept about five or six hours last night. I slept so hard that when a nurse came in this morning I could neither focus nor conversate with her. I actually thought it was a dream until later she laughed and told me that it was all too real. Luckily she cut me slack for exhaustion and didn't hold my drooling incoherence against me. At any rate....with sleep comes perspective.

David gets to go home today. A part of me wants to shout it to the roof tops and plan the rest of my day(yes...I said the dreaded word). However, instead of an insanely, over the top, gushingly optimistic diatribe...I will just give you the facts.

Since being here we have seen the pediatrician hospitalist (I believe that is what they are called), neurologist, orthopedist and wound specialist and all are attached to teams of residents and students. Needless to say we have a steady stream of doctors/residents/students coming in and out, making rounds and teaching as they go. David usually gets extra attention because apparently he is an excellent teaching tool. Go figure. This morning has been no different and we have had a packed house since early. Luckily they have all been on the same page....David can be dismissed. 

The neurologist and team says that he thinks the seizures were brought on by a cocktail of pain, fever and another traumatic surgery involving hardware. He doesn't anticipate further issues but if they happen again,  we will adjust meds and the VNS until they go away.

Ortho and team says that they think he is doing well. He will keep the splint on for three weeks. At that point he will come back in for out patient surgery to re xray and make sure the bone is healing well and then the splint will be removed and a real cast will take its place. That will then be worn for another three weeks. At that point the bone should be healed and hardcore physical therapy can commence.

The wound team looked at the places on his ankle and knee that the spika brace had been rubbing despite my best efforts to keep the areas rub free. All are now bandaged and since it will be at least six weeks before we need the brace again....hopefully by then all will be healed.

The pediatric team concurs with the other teams and although his white count was a little high and they want me to follow up with Dr. P, they think he is good to go with the addition to his medicine repertoire of Calcium plus Vitamin D and Magnesium, two things his body was low on. From the sounds of it....you all better be buying stock in the vitamin Calcium +D because David is going to need a truck load.

So I guess, before long we are heading home...by EMS of course! I gotta make those people some cheesecakes!

It occurred to me last night, that as much time as we seem to spend getting our frequent hospital flyer miles in not just one but two states, we don't spend nearly as much time as some do listening to monitors going off and watching doctors traipse in and out. I still think of little Hadley Walker who is back in New York spending months in the hospital away from home and dealing with surgery, chemo and radiation. I know her parents are worn and little Hadley's body is exhausted fighting this fight. I also think of Adele White who has spent most of the last year with her family going back and forth to Kansas City, St. Louis and Oklahoma City fighting her fight against the dreaded disease cancer. Both families know all too well the exhaustion, fear, long hours of waiting and sometimes frustration that comes from days on end of hospital stays. The roller coaster ride of emotions and the times you spend praying, crying, fearing the worst and hoping for the best are draining and the times when you are tied to the room are the worst. You have no concept of time or the life that is going on outside your hospital walls. You live on hospital food or the generous donations of friends who bring you food and you dream about the day when your child is healthy and you never have to see the inside of that building or any other building like it again. No child should have to count their childhood by hospital stays, however both Hadley and Adele seem to be doing an amazing job of kicking cancers butt!

Please keep Hadley, Adele and yes....David in your prayers. And on that note with no pomp and circumstance or over the top gushing....I say Thank you God....we're going home today!

Another Hell Night

Two a.m. and I are meeting all too frequently anymore as are ER's, hospitals and I. I would really like to break up with the lot of them and simply say....I'm just not that into you! Unfortunately I don't think it would do me any good. They are like that ex that simply won't move on! Every time I turn around....they are there! Yes, this is the kind of gibberish that comes from someone who has seen 2 a.m. come and go for three nights straight with only about 2 hours sleep thrown in for good measure. So please try not to judge me too harshly!

We continue on the roller coaster that seems to be Davids hospital experience! After a night of little to no sleep and much pain, David finally was on his way to surgery about 3ish Monday afternoon. Dr. K had conferred with Shriners and they left the femur surgery in her hands. She asked if I wanted the invasive or non-invasive surgery. Non-invasive would be....sedating him and then manipulating the leg externally into  position and then casting him. Invasive would be....actually cutting the leg open and putting a plate and screws where the break was. Upon asking more questions I found that the leg would likely be stronger and weight bearing much faster if we used the plate, so invasive it was. 

The surgery waiting experience would have been very tedious if it wasn't for my little pregnant guardian angel from my nightmare ER migraine episode the other night. She brought me a phone charger (as mine had been forgotten in the rush of David screaming and EMS picking him up on Sunday) and she passed the time with me as we talked about everything under the sun. It was an amazing distraction. Finally a little over two hours later, Dr. K found me and told me that the surgery was over and David was in recovery. Apparently it was a blessing that we decided to go the invasive route as during the surgery she found that the bone was not as cleanly broken as the x-ray indicated. In fact the bone had been somehow crushed and parts were "crumbling like a cookie!" Still she was able to get the screws and plate in and she was confident they would hold. I on the other hand must have looked as if someone had punched me as Dr. K put her arm around me and said, "Don't you worry about this and don't you blame yourself. These things happen. You take excellent care of that boy and you are a great mom!" As nice as the words were, I was feeling far from Mother of the Year. This is the second major surgery on his legs where he breaks something during the recovery. Last time it was his ankle and this time his femur. I truly did feel like a horrid mom. After some brain storming though, we figured that he had likely caught or twisted his leg causing the original break and then me lifting his leg over and over again to change him probably gave him the crumbling bone. I felt horrible knowing that I could have had a part in causing him that kind of pain.

When all had settled down and we were back to the room after surgery, another friend came up to bring me supper. I was never so happy to see food....and good food too. She brought Freddy's with fries and fry sauce. David was sound asleep until he smelled those fries and heard the rustle of the bag. Then he sat straight up looking for fries. As we visited, Davids IV site blew and then another IV had to be placed. He was in no mood for this and it took 4 of us to hold him and ensure a pleasant time for all. Once again he was to prove not to be an easy stick. They would try and then fail. Then.... he suddenly had a seizure. It was one of his basic seizures except for the ending where he seemed to literally pass out in my arms. As his head hit my arm I realized his face was very hot. The same face that 5 minutes ago had been cool as a cucumber (blame my mother for that old adage!) After a quick temp we learned he was sitting at about 100. About that time.....in walks a resident. Now normally I like the residents and MD's on the floor but this guy acted as if this was his first day with a stethoscope. At first he said nothing and then after I told him what had happened he kept saying "Well ummm....well," all the while acting like a fidgety child. When he found his voice he asked what I thought was going on. I told him that I thought Davids temp caused the seizure. He then proceeded to tell me his temp was not high enough to do that. I then schooled Fidget Boy on the fact that it is not the degree of the temp but the sudden rise or fall that causes the seizure. I also told him that this was not my first time going through something such as this with David AND that David was not acting right. Again he said, "Well...um!" Having no patience for this, I said that I wanted Davids neurologist called immediately and that I wanted them to give David something for his temp ASAP before it climbed any higher. He apparently concurred with my course of action and got right on it. I told my friend that I want Fidget Boys pay for the evening (low as it may be as a resident) as I had just done his job for him!

Eventually a PICU nurse came to the rescue and found a good vein on David and an IV site was restored. None too soon, as the neurologist Dr. S, ordered IV seizure meds which I had to explain how they were to be given after past experience with the med and Davids blood pressure bottoming out. Davids temp continued to rise because of a delay in getting tylenol in him and my friend had to leave. She hadn't been gone five minutes when they took his temp and it had climbed to 103. I asked for ibuprofen to go with the tylenol he had already had. I was pretty well done with Fidget Boy by this time and he was pretty aware of it I am sure. He would walk in the room and just look at me. I ignored him and focused on David. This resident knew he was in over his head and he brought in the senior resident. I could tell that she was concerned as we had put ice bags on David and his fever was still climbing as well as the fact that he had thrown two more really scary seizures. She decided that it was time to move David to Pediatric ICU as David needed one on one nursing care. I was both scared and relieved about the transfer. Scared because you have to be pretty darn critical to end up in the PICU and relieved because I was done with Fidget Boy and his "Well....umm's!"

Once in the PICU, David was quickly stabilized and after awhile his temp seemed to break. Just as quickly as it had climbed to 103, it had fallen to 98.6. His skin was cool and clammy and his bed was soaked in sweat. He has not opened an eye since he finally went to sleep  about midnight but he has whimpered from time to time, from pain no doubt. Not the ringing of his alarms when his breathing gets too shallow or the ventilator alarm across the hall have made him so much as flinch. The nurses have changed him, moved him and shined lights in his eyes and still he snores. Is he out of the woods? Maybe, but at this point I would not be so bold as to say so definitely. After all....once again he has shown me that definites don't exist, plans are for the foolish and bold statements of optimism are just a catalyst for an opposite if not equal action to occur.

Currently on paper, or should I say monitor....David looks good. His snores are short and shallow but he seems comfortable in between little whimpers of pain. The seizures seem to have ceased and his skin is cool to the touch. Perhaps another Hell Night is drawing to an end. Meanwhile I sit here typing, fearing sleep and realizing that regardless of all the times I have told you all to be prepared in case of a hospital run.....I wasn't. Along with forgetting my phone charger, I also forgot my toothbrush, hairbrush, sleep pants and house shoes. Sigh! 

It is likely a given that we will spend another day at the House of Wesley. High fevers and seizures don't usually get you a confident dismissal. Chances are we will move back to the regular pediatric unit and then if David behaves, we might get to go home on Wednesday. No that is not me planning!!!! Maybe somewhere in the midst of it all, I will relax enough to sleep and perhaps then I will be nicer to the Fidget Boys of the hospital. But then again.......I doubt it!

Five Steps Forward and Ten Steps Back

Apparently February has decided that it will not be outdone by either December or January. Luckily it is more than happy to change things up a bit and keep everything interesting. If you recall my last blog post was full of roses and sunshine. Today we will talk about a few weeds. 

Saturday evening on the tail end of Friday's good news, hopeful outlook and an obnoxiously positive facebook status about David being seizure free for a week and moving back to his own room the next day....weeds started sprouting up all over my proverbial flower garden. They came in the form of a wiggling David who couldn't seem to get comfortable and wasn't straightening out his legs. I immediately checked his incisions. They were still beautiful. There was no redness, heat or swelling. Next I tried to check his legs but he refused to allow me to touch them. I looked the best I could to see if there was any swelling or redness in his legs in general and there was not. However, there was obviously pain. Pain so bad that he was screaming loud enough I was afraid passerby's on the street could hear.....and there were tears. Lots of tears. Those of you who know David personally know that there are never tears and screaming where pain is concerned. There maybe hair pulling, pinching and trying to bite.....but seldom tears.

I frantically tried to figure out where this pain was coming from. I ask him where he hurt and to my amazement he pointed to a spot just about his right knee. He was holding that spot so tightly that it was leaving finger marks. There was no swelling or redness though so I was not absolutely sure this was actually where his pain was. He was trying hard also to sit straight up which he did a lot of after his first surgery as this apparently helped to stretch his hip muscles. Because of all of this, I was beginning to wonder if during our time out on Friday that possibly he had twisted or turned something in his hip causing a muscle issue. At any rate for lack of a better solution and because I needed to be able to change and move him, I put his spika removable brace back on him. This itself was no easy task but once on he seemed to be more comfortable.

With his legs stabilized and him resting a little more comfortably, I was pretty sure we were dealing with muscle pain but neither of us were to shut an eye all night as he continued to squirm, moan and oh....did I mention he was having stomach issues that required multiple changes and multiple spika brace lifts? It was a long night.

Yesterday David smiled little and remained somewhat uncomfortable. I checked his legs regularly and he did manage to cat nap a few times so I thought that it likely was just muscle pain. By early evening though.....the squirming became worse and the tears began again. Even with his hips stabilized he was still in obvious pain and it was getting worse. He was beginning to get pale and with each tear I became more concerned. Finally I decided that a call into his pediatrician and the doctor on call might be necessary. I fully expected to hear him say keep it stabilized and bring him in tomorrow. Instead I was told to get him to the ER and have EMS take him. The doctor was concerned about infection or an issue with his hip hardware. He did not want to wait until tomorrow or risk transporting him myself.....especially when David was in so much pain. So I called EMS and once again they were there within minutes and they transported my little guy to the ER.

Once at the ER.....David was out of patience and everything made him fighting mad. He was not about to suffer us fools for one more second. First there were x-rays, followed by IV's another stick for blood work and doctors and nurses touching and trying to move his legs. The first x-ray brought to light for me that during his surgery the doctor had broken both his hips to then put plates and screws in. I had no idea that this is what the surgery entailed. It made sense but still that really got me. A double break!!!  Perhaps because I was already exhausted and on the verge of an emotional break down anyway, but news of this double break nearly had me in tears. At any rate a break was ruled out and the next concern was then infection. His white blood cells were slightly elevated but they felt this went more with the pain and not with infection. The ER doc then came in to tell me that they were going to do a hip CT...... at which point I began throwing a bit of a fit. After having two head CT's in January and having the hospitalist tell me not to let him have any more CT's unless an emergency (at least not for awhile), I was not liking the news of this new test. It was lucky the ER doc was both kind and cute. He said he understood my concern but since MRI's are out due to Davids large amount of bionic man hardware, the CT was the only way they could get a good picture of the hip and get to the bottom of what was going on. Luckily for us all, his smile and my exhaustion trumped my tantrum. David would be getting a CT. We had to stop his pain!

It seems that the cute doctor took my concerns seriously and as the nurse pulled Davids bed out of the ER room and down the hall towards CT, the doctor jumped in front of the bed and said....."Take him back!" He then pulled me over to where an xray of Davids leg was hanging. He then showed me his hip which other than having a huge plate and screws in it.....looked fine. However....down towards the knee but almost cut out of the picture (they were only x-raying the hip after all) looked to be a sliver of bone that was not connected to the rest. The doc said that before he sent David to CT he wanted to take another x-ray, this one closer to the knee. I was all for that. Within 20 minutes his suspicions were confirmed. Bad news? David had a break just above his right knee. The exact spot he was grabbing and pointing out to me the night before. Good news? No CT was necessary. We take our wins when and where we can.

I immediately felt tears again. How did we go from perfectly straight, no pain and ready for physical therapy to a broken leg in less than 48 hours? Then I began wondering what this meant for the here and now as well as the near future. Well....here and now meant a stay at Casa Wesley, surgery to repair his break and a cast. As for the near future....no PT which means his chances of walking by June are drastically reduced. This SUCKS!!!!! I am trying desperately to remember though that nothing happens without purpose and that there is a reason for this. For the life of me though, I am having trouble figuring it out. It seems like once again we move forward 5 steps....just to be knocked back 10. However, I am reminding myself that David did not have to have a CT, he is not having seizures, he is not sick, does not have a life threatening disease and as issues go.....a broken leg is both fixable and fairly small in the big scheme of things. This will all likely mean more to me once I actually get some sleep.

This morning we wait to find out when surgery is. So many questions and thoughts are running through my head. How did this happen? Did I do this moving him or did he do this to himself pulling on his own legs? Are his bones that brittle or is this common with surgeries like David had?  The questions just keep on invading my brain and so far there are no answers. David can neither eat nor drink and with the pain....he is not in a great mood. Spongebob isn't even making him happy. It is expected though that surgery will be this afternoon. They don't think that they will actually have to cut into him but they will have to manipulate and maneuver the leg to put it into place (under sedation) and then cast it. Maybe we will be released tonight but my bet is that we will get to invoke our guest status here at least one more night. Hopefully though, however this plays out, there will be relief for David, answers for me and at least a couple of hours sleep for both of us by days end.

A Miracle...Just Around the Corner

I will start this by saying: I love telemedicine with all my heart!!!! Yesterday was our first appointment to our local ortho clinic where we saw both a local ortho doctor and also our Shriners doctor (Dr. S) via computer. It was amazing for several reasons.

When we got there (driving time about 30 minutes) we were escorted back to x-ray where pictures of Davids hips were once again taken. As he lay on the x-ray table, I couldn't help but marvel at the straightness of his legs. When you have seen your child first so tight that his knees where always pulled up and his hips were so turned that his knees touched and then you see your child so bow legged that his feet can do nothing but cross over each other......you can't possibly understand the joy of simply seeing his legs.....straight.....from his hips to his feet. It almost takes my breath away.

Once x-rays were completed then we were called back to a narrow hallway outside a conference room. We were third and last in line behind two other families. I had no idea how this process worked or how long we would be there. Luckily David was just so happy to be out of the house that he was pretty patient through it all. While we sat there I thought back over all the wonderful things David seems to be doing 6 weeks out from surgery. Not only are his legs straight but we are down to using his spika leg braces every other night. He is now up and about most of the day and I am sure he would have been doing this much sooner had he not been sick. He has already gotten up on his knees and he has let me know in no uncertain terms, that he is ready to start sleeping upstairs in his own room again. I have been waiting until we have gone an entire week without a seizure. Today is that day!!!!! Finally...he seems to be able to sit comfortably once again in his "own" wheelchair. Yes....he seems to be progressing nicely. At least to me he is but I couldn't help but wonder what the doctors we were about to see would say. The familiar churning in my stomach was starting to make me question everything.

We waited for about 20 minutes and then I could hear Dr. S's voice in the conference room. Once that happened then the family at the head of the line were called back. I was told by the lady who set up our appointment that sometimes the appointments lasted 5 minutes and sometimes 25 minutes. It just depended on the child and their circumstances. We were prepared to wait, however.....within 15 minutes we were the next ones in line. When I heard us being called back, I couldn't help but be amazed at the ease of all of this so far.

Once in the conference room, we could see Dr. S on a huge screen and the other ortho was in the room also. David went wild waving and saying "Hi!" as he saw the good doctor and crew.  Dr. S asked for today's x-rays which apparently could be easily put in his view.  He said he was beyond pleased with what he saw and the other ortho apparently was too. He asked how David had been and I told him of the seizures and flu and he asked if David were 100% yet? I said that I thought he was. He said "Then get him his new orthotics and get him going to physical therapy at the hospital. I want to see him in 4 months and I want to see him walking by then." The absoluteness of it both thrilled me and terrified me. Four months and David walking? Was it possible that we were that close to this miracle that he has suffered so much for? God willing we are getting closer.

Our entire appointment lasted about an hour and our time with Dr. S was about 10 minutes long. The greatest thing though was that as we went out to get in the car I realized that the trip home that lie ahead of us was not 7.5 hours but a mere half hour. It was an amazing feeling and I was happy and grateful and excited and scared as I realized how much of a life changer these next few months could really be.

In the next few days the weather in our area is suppose to be nice. We are finally all well and David got an amazing thumbs up from Dr. S. While I long ago quit trying to plan, I have never lost hope and so with that I have every hope that by June, Davids life.....and all our lives for that matter, are going to look very different. With all of this I can't help but wonder......could there really be a miracle just around the corner?

Mothers Brain vs. Seizure Brain

Yesterday was a long day of doctors. It was David's first non-hospital doctor visits since before his surgery. Along with seeing his pediatrician, we also had to make a not-so-quick and unexpected visit to his neurologist. After being almost seizure free for a very long time before surgery, David has started back to having seizures frequently to the point of several times a day since surgery.

In "my head" the catalyst for his recurrence of seizure activity was the day of his surgery when he went 16 hours without meds. We had a repeat of this on his second visit to our local hospital via ER when he went about 12 hours without seizure meds. In my non-medical mother brain.....the two seemed to be if not totally, then at least partially to blame for our now roller coaster of two and three daily seizures. They were even beginning to wake him up out of a sound sleep. Finally....yesterday after having three in an 8 hour period, I called the neurologist yet again....third call in as many days. They said bring him in and off we went.

After the usual check to see if their list of meds and dosages and my list coincided and after a multitude of questions about his seizure history.....this go round, then I started to ask some questions of my own. I really wanted to know if my mother suspicions were anywhere near the truth. Since I had been told several times over the years, that Davids seizures were likely originally started because of his first febral seizure back in 2008, then I wanted to know about his new seizures. I asked if going without his meds for those long periods could have been what sparked these new ones and I was told a definitive.....YES! It was explained to me that seizures were like starting and maintaining a fire. In other words....it takes a lot to get it started but very little to keep it going. It took a lot (the first febral seizure) to get David having seizures, but now.....another febral seizure, missed med doses, etc can all be the kindling to restart and keep the fire going. And like myself, the doctor believes that the long period of missed doses were what has rekindled his seizures. So where do we go from here?

As much as I hate it, we are kind of back at a starting point. Without an EEG we can't know for certain but likely his brain is showing signs of seizure activity all over again. His last EEG showed none. The doctor turned his Vagus Nerve Stimulator (VNS) up and we have gone back up on meds that before surgery we had been able to decrease and we have once again added new meds to help control the seizures. We will stay on this path until we are sure we have the seizures under control. Likely we will be looking at an EEG in the next couple of months to make sure we are getting it all handled. Then hopefully from there we will be able to start backing off on the meds again and be headed in the right direction.

So in my frustration over all of this, I asked the doctor what I should do if/when he ends up in the hospital again and the hospital staff can't get him his seizure meds on time? I was told to make sure I always had ours from home and to give them to him myself. I said, "But what if they tell me absolutely not and as in one case, I have a nurse try to take his magnet for his VNS away from me?" Do it anyway I was told and have them contact him if they find it to be a problem. Great! I wonder how much trouble this will get me in....and what new battles will ensue because of it????

Bottom line though.....my mothers brain/intuition or whatever you want to call it was right. The nurses/doctors or whoevers inability to work with the pharmacy and get the meds in a timely manner was what triggered all of this fresh hell of seizures. Sadly this was not one hospital but two and in two completely different states. This tells me that there is a problem where this kind of thing is concerned and I am sure my child is not the only person affected by this type of thing.

To anyone who reads this that is medical/pharmaceutical staff in a hospital, I know you are crazy overworked but the fact is that certain meds can wait and certain meds cannot. For some this can be the difference of how good someones quality of life is and in others the difference between life and death. Seizure meds can actually affect quality of life and in some cases....life itself. Nurses....PLEASE think about this when a patient or a patients parent tells you that their meds are needed ASAP and pharmacy.....please don't make a nurse have to contact you repeatedly to get the right meds and the right dosage to the patient. Because of just this thing.....David had taken ten steps forward and now he is about 25 steps back. It sucks!

To top this all off, when I went to my regular pharmacy to pick up Davids new meds, it took an act of Congress to get the new meds. Because of all the seizure meds that David already takes, insurance apparently flagged me on the computer as the doctor had written a new script with an added dosage on something he already takes and a script for a new seizure med. After showing insurance cards, ID and signing my name in blood.....they finally filled the script with the warning that my insurance may not pay for two of the meds next time. Aaaaarrrrrrrggggghhhhhh

Yes.....in case you can't tell.....I am frustrated! This too shall pass I know, but why when life can be difficult enough all on its own....do others have to jump in and make it more so? More money I don't have, more time going backward instead of forward and more frustration which it seems I have more and more of on a daily basis! It is days like this that I just have to refocus and remember all the things I have to be grateful for and just pray that I can find a way to take care of the rest!

I Wouldn't Change a Thing

When I began this blog in 2010, the reasons were multifaceted. The main idea I had in mind for it was a place for both the world to know about David and for those close to David to keep updated on his life. I also needed a place to sound off and think out loud where life with the Incredible Mr. David was concerned, and finally I wanted to have a place where parents with special needs kids could come and read and maybe get some information....and possibly learn something that their doctors, social workers or therapist overlooked. After all....these kids really don't come with owners manuals and because of the individuality of special needs kids, pulling information can sometimes be like pulling teeth. If I am honest though, this blog has been as cathartic for me as it has been informative for others, because in order to be forth coming with information.....first and foremost I have to be completely honest about who David is and how his disabilities effect both his life and our lives as a family. That has been beyond difficult at times because for the first 8 years of his life....I didn't see David as "special needs." I simply saw David....as David.

It wasn't until 2008 when David had his first seizure that I had to get real with myself and the world about the fact that Davids normal would never be the normal that the rest of the world went by. Up until January of 2008, David was on no meds, no oxygen and no tubes of any sort. It was easy to forget that he was anything but perfect. After that first seizure though, I started to realize that I couldn't hide from the reality of Davids condition(s) and living in a bubble of denial was doing neither of us any good. I had to get real, get educated and get on with the business of making Davids life the best it could be. In doing this, I learned very quickly that anything having to do with disability or special needs can be met with miles of red tape, hours on the phone, forms for this, forms for that, a great amount of misinformation even within the same agencies and stress, frustration and the reality that there is no way to go but forward. After all.....YOU are your child's advocate!

At times this blog has sat dormant for months. The reason is, that writing here can be daunting. Never do I write in this blog that I am not keenly aware that someone may either stumble upon this blog or even search it out in hopes of finding some tid bit of information that may help them in their own journey with a special needs child. Knowing number one, how hard it can be to find some forms of information out there and two, knowing how much it helps to find someone that is going through what you are going through (or at least something similar) and how they came out on the other side is so important in this journey. I want people to know that having a special needs child is a gift. It is rewarding and amazing in ways that you never dreamed possible, but it will also be the hardest thing you are likely ever to do and without support and information......it can seem impossible. And that is why I blog about the Incredible Mr. David!

It has been just a little over a month since David had the last surgery at Shriners to correct his hips. In that time period we have traveled about 2,000 miles going back and forth to St. Louis twice. David has had three rather lengthy hospital stays (3 days or more). He has had two round trip ambulance rides to the ER. He has had leg casts on, leg casts off, multiple fevers, multiple mini seizures, a bladder infection, two rounds of high powered  anti-biotics, a yeast infection and pneumonia. He has watched the Spongebob Movie at least 3 dozen times, suffers from what I know is cabin fever and he is I am sure, sick to death of only seeing mine and his brothers faces.

Surgery wise....David is doing amazing. His incisions have healed beautifully and he is able to go longer and longer without his stabilization orthotics. He still winces in pain from time to time but I can see real progress with the surgery and his recovery. His legs are so straight and perfect now, with the exception of his right foot/ankle which will likely need work down the line. I can't wait for his physical therapy (PT) to start and for him to start strengthening up those legs. Right now they are a bit thin and unmuscular but I have no doubt that will change down the line.

Starting February 14th, David will be starting something new. It will be the telecommunication with Shriners hospital. We will be able to have him seen by an ortho here and they will telecommunicate with his doctor at Shriners. It will save us miles of travel back and forth and also help if there is an emergency here as he will have a doctor here familiar with his case. There is just no end to the praises I shout out for Dr. S and Shriners. They have changed Davids life and set him on the path towards an independent future. They are amazing and I strongly encourage anyone with a child with ortho or spinal issues to contact your nearest Shrine or contact me for more information on this. Shriners literally creates miraculous outcomes every day!

Life in Davidtopia has taken some strange twists and turns in this last month. It has kept us on our toes and at times......on the edge of our seats. It has been a mix of beyond amazing and pretty scary. There have been a few long naps and a lot of short nights. Slowly but surely I am seeing David come back to his laughing, happy self and after the 14th.....I have every expectation than he is going to be ready to be pushing himself and everyone else to be up and walking.

The funny thing about having a child with special needs is, no parent would ever wish for their child to be born with physical issues, mental issues or both. When it happens though, you learn that the milestones other parents take for granted or that you took for granted in your other kids.....take on a whole new meaning. You adjust your expectation of "normal" and you find yourself so grateful for each new challenge, each new ability and each new day. You learn what is really important in life and what really doesn't matter in the big scheme of things. You learn to fight hard, laugh more and love beyond anything you ever dreamed possible. Then one day you realize that through it all....the long nights, ER runs, hospital stays, surgeries and all the the rest.....that this child has changed your perceptions, your ideals and your world.........and you know what? You wouldn't change a thing!