Okay...sadly I must admit that I am writing this blog because I am in procrastination mode. A million and one things to accomplish this week and I choose this. However....if I must procrastinate...this is the place to do it. Don't you agree???
Before I go further...I must ask if everyone has noticed the PR and media work that Shriners has been doing of late? I have seen numerous commercials on tv for Shriners as well as billboards in Wichita. I am thrilled and I must say....it is about time. The world should know how great Shriners is and if I could....I would shout it from the roof tops. As it is.....I am constantly telling people about what a wonderful place it is and I am not surprised to find that many like myself had no idea what a gift from God Shriners can be to so many families. I have even directed a family or two in the Shriners direction. I thank God every day for such a miraculous place and for the people who directed me there.
So onto current news of David. He has really been wonderful for the most part. He has missed four days of school so far. One because he really wasn't feeling well (allergies and all), one because he did an all nighter. The school was trying to experiment with him not having a nap after lunch and so they kept him up all day. By the time he got home he was exhausted and cranky and just too tired to sleep. This continued until 5 a.m. at which time he zonked, so school was out of the question that day. What did we all learn???? As long as David is on seizure meds...he needs an afternoon nap! Finally....he missed two days because of his VNS (vagal nerve stimulator) being put in. One day for the surgery and one day for the recovery.
The surgery went very very well. We went in on Thursday morning and he was in surgery by 9 a.m. I knew that it was a fairly simple surgery but after his last surgery...I couldn't help but worry about his heart rate. The whole time waiting I kept hoping that all was going well and that his vitals would stay good. My heart nor my head were up for a replay of April. It was quite an interesting experience though. Not only did Dr. Grundmeyer and the anesthesiologist talk to us before surgery but also a gentleman from Oklahoma City where the VNS company is located. Apparently he or an associate travels whenever and wherever a VNS surgery is happening to oversee the procedure. He talked a little with me before the surgery and then when Dr. G was closing the VNS gentleman came out and talked to me more.
It was kind of funny when he came to the waiting room to find me. He was actually laughing. He said "Do you know what a character your child is?" I'm sure I looked a little frightened about what his next words might be. Then he laughed and said that David boogied, laughed, clapped and said "Yeehaw" the whole time he was in the OR until they put him under. Yep!!! That's my boy. He also assured me that the surgery had been text book and that David was doing just fine. He then gave me instruction on the VNS.
To put it simply....a VNS is about the size of a quarter and runs on a watch type battery. It is put in under the skin just below the left collar bone. Another incision is made on the lower left neck. This is where the pigtail type wire goes over the vagal nerve. In about two weeks after the surgery....we then go into see Davids neurologist Dr. Shah and he will then turn the stimulator on. It takes a period of time and several adjustments to get the VNS right so that it stops all seizures. If a seizure breaks through though...there is a magnet that David carries with him all the time that can be placed on the chest incision for three seconds that will stop seizure activity. To tell you how great this is...if a person has grand maul seizures that last 2+ minutes and the magnet is placed over the VNS for 3 seconds....it cuts the life of the seizure to about 30 seconds. For Davids 30 second seizures....it would make them no more than 10 seconds. And for those of you who have experience grand maul seizures or have been with someone who has had them....you know that the aftermath is exhausting. A grand maul is like running a marathon. Afterwards the person will often sleep 12-24hours. If the magnet is placed over the VNS for three seconds after the seizure...the recovery time can be whittled down to just an hour or two. Amazing! VNS guy also said that 99.9 % of the patients who receive a VNS are seizure free within 8 months; 88% have tremendous attitude and mood change for the better, 75% can cut their seizure meds in half and 25% come off all meds altogether. Other incidental side effects from the VNS have been cases of kids who couldn't walk who start walking and non-verbal kids can start talking. It all has to do with the brain not constantly being bombarded with seizures. Amazing. I also learned that the magnets that are used are VERY strong. They can't come in contact with any kind of cards that have magnetic strips on them like bank cards, credit cards, etc because they will ruin them. They also can't come in contact with cell phones or they will mess them up too. Finally....they can be put on the refrigerator for safe keeping but not on the ice maker side as it will ruin your ice maker. Hmmmm....that is pretty darn powerful.
As I said...the VNS runs on a watch type battery and it should last anywhere between 3-6 years. However....certain things can eat the battery faster....such as close lightening strikes and constant cell use....also the number of times it has to be used to stop seizures. Hopefully though we will keep our uses, lightening strikes and his cell use to a minimum. Bottom line though....I think this could prove to be an extremely important gadget for David.
When they finally took me back to recovery....the words I dreaded came from the nurses mouth. She said...."His heart rate is a little high!" I nearly choked. Not again was all that I could think. I prepared myself as I walked in and asked the dreaded question...."How high is it?" When she came back with 120 I almost cried with relief. All I could think is 120 is a walk in the park. I had totally braced myself to hear 170-180. Over the next 30 minutes his heart rate came down nicely and he woke up. He was obviously sore and a little quiet...but no worse for the wear. After I took him home...for the rest of the day and all of Friday he really didn't want to move much. He laid in bed and slept or watched Spongebob. Saturday he wanted to play but kept pointing to go back to bed. By Sunday though he was his old self and raring to go. His recovery has been beautiful and Wednesday we go in to have the VNS turned on.
During the ordeal he did throw a few seizures as his meds were missed or not on time due to the surgery. He had about 4 seizures and then the meds had them controlled again. I just can't imagine how wonderful life would be if this VNS controls his seizures to the point of not needing meds. If that happened he would be a med free child and what would his attitude and life be like not having to stop everything 3 times a day for anywhere from 5-10 pills at a time. Wouldn't it be wonderful?????
Since the VNS we have also had to go get measurements for David a new walker (he has way outgrown his old one) and also to have his wheelchair revamped to fit him better. He is going on his 6th year with this one and they can only grow it one more time. Since his April surgeries his hip base is wider and his knees tend to turn out rather than in....thus making his chair too tight for his body.
At school David no longer fights his tummy time or his stander time and he is making great strides in weight bearing. Just last week he walked 6 feet with his walker. There is still difficulty there as he is still getting used to his "new" legs but he is definitely making progress. His legs are beautifully straight and every day it seems he tries to do more. Our goal is to have him walking with his walker by January. If anyone can do it....it will be David!
So as you can see....David is progressing nicely. As hard as those first couple of months where after surgery....they are kind of like child birth and quickly forgotten. I would do it all over again if I knew it would get him to this point. David is amazing. We will be going back to Shriners in October for another check up and hopefully we will then be ready to start looking at his spine and be making plans to take out the plates in his knees and hip. So much to do and so worth it to give David the most awesome chance at an independent life!
