The VNS has been successfully implanted...PHEW!!

He did it!!! For Ammon it was fantastic although the anesthesiologists who wheeled him into surgery were quite harried trying to keep him on the bed as he kept trying to leap out. They were shocked he was still so agile and active after being given virsed to sedate him. I had forewarned them but who believes a mom?!? We arrived at the hospital at 5:30 AM as the hospital knew of his strong will and fight or flight instinct and put him very first on the surgical schedule. They had BUBBLES which helped keep him occupied and for the first time ever was able to have a blood pressure successfully taken while not in a seizure.

Ammon started to fall apart around 7 AM but by 7:30 was wheeled, albeit unwillingly, down the surgery corridor.

The surgery was completed just after 9 AM. As they took me into recovery I could guess where he was because I could hear him demanding "De Dow!! (Get down)". He wanted out of the bed. He pulled out his IV and blood was spurting. (He had torn off the ID bracelet before he he even made it surgery. Thats my boy!)

Since he did so well physically and there was no way to keep him in a bed, they allowed us to take him home. He was feeling safe enough in the car to finally relax and sleep much of the way home.

He has two two inch incisions on his neck and a three inch incision just above his left nipple. You can clearly see and feel the round VNS device implanted there. Honestly, it is quite creepy for me to see and feel but glad to have it. There are quite a few stitches and the bandages there are to be kept on for 7 days. HAHAHAHA! We didn't even make it into our driveway before the bandages came flying from that back seat into my lap. I've now rebandaged and wrapped him up in ace bandage to keep him from getting it off and bothering and bursting open those stitches. It will be a challenge to keep up with him.

We sure felt all your prayers. We felt every one of them. Truly it helped. We love you our friends and are so blessed by you all. Big hugs and kisses out to you!! We are exhausted and are staying home bound and Ammon centered for the next few days. It will test all my ability to keep him quiet and safe. Hoping baby Aaliyah will wait until atleast next week before she shows her glorious little self.

We go back up on 9/2 to have the device turned on and we are so anxious to see if this device will change his life. And ours!

Ammon's Surgery is 8/10/10

We have seen the neuro-surgeon. He has confirmed that Ammon is not a candidate for specialized surgery to remove the sparking parts of his brain to control his seizures. There is too much damage in too many places. Oh, our little son.

Ammon will now have a Vagus Nerve Stimulator (VNS) implanted next Tuesday, August 10th. It will not be turned on for two weeks to ensure that the nerve has a chance to repair from the surgery and make sure the wound does not become infected. If it becomes infected the device has to come out. That gives us time to have the implantation, come home for baby Aaliyah's arrival, get the kids back to school and then back to Primary Children Medical Center before the end of the month.

Ammie has four loose teeth and we went in today to have them pulled so that if they have to tube him during surgery the teeth won't get knocked down his throat. As things go with Ammie, he was having none of the lying down and helping the dentist so he has to go in Monday morning for sedation and then trying again.

We are hoping for the best. In 50% of patients the with the VNS they have a 50% reduction in their seizures. Twenty five percent see more than a 50% increase. The last 25% will see no improvement at all. We are keeping our hopes we will be among the successful 75%.

I'm going to paste here a description of what the VNS is and how it will work.

Vagus nerve stimulation therapy is another form of treatment that may be tried when medications fail to stop seizures. It is currently approved for use in adults and children over the age of 12 who have partial seizures that resist control by other methods. The therapy is designed to prevent seizures by sending regular small pulses of electrical energy to the brain via the vagus nerve, a large nerve in the neck.

Vagus Nerve Stimulator

The energy is delivered by a flat, round battery, about the size of a silver dollar, which is surgically implanted in the chest wall. Thin wires (electrodes) are threaded under the skin and wound around the vagus nerve in the neck. The battery is programmed by the health team to send a few seconds of electrical energy to the vagus nerve every few minutes. If the person with the system feels a seizure coming on, he or she can activate the discharge by passing a small magnet over the battery. In some people, this has the effect of stopping the seizure. It is also possible to turn the device off by holding the magnet over it.

Side effects of VNS therapy are mostly hoarseness and, sometimes, discomfort in the throat. There may be a change in voice quality during the actual stimulation. Although complete seizure control is seldom achieved, the majority of people who use VNS therapy experience fewer seizures. In some its effectiveness increases with time, and patients report an improved quality of life. As with surgery and the ketogenic diet, it will almost always be necessary to continue anti-epileptic medication although the patient should be able to take less medication than in the past.

I've lost my patience with waiting.......

I tried to be patient. I really did. But when we still hadn't heard back from the neurosurgeon about Ammie's MEG. I called again and left a message that we were highly discouraged and felt that nobody was advocating for my son.

It just irks me that in the time that it has taken to get the MEG scheduled, administered, reviewed, and then share with us a BABY has been conceived and will be born. Is that not ridiculous? And we paid $20,000 for this test back in January. Wait until we have another layer of government to go through. This system has problems!

The nurse called me back and shared with us that they all care and that the pre-surgery consult has already been scheduled for 8/9/10. Uh, that is true because when I was seeing the neurologist on 6/18 I had a strong feeling I better make an appointment for Ammon with the neurosurgeon just in case he forgot about us. I MADE THE APPOINTMENT as a worst case scenerio. So lets say that at the appointment the surgery is given a green light. When can we have it? School starts for all my children on 8/16. Then baby Aaliyah is due to arrive on 8/22. When will this happen? We kept all summer open to have this done. Feels like being in adoption limbo not being able to plan life because you just don't know when the light will turn green.

Right now my husband and I are really leery of having any of Ammon's brain removed if he chances losing any of his language and intellectual functioning. What good is having a seizure free brain if you are unable to communicate with people? Right now he can understand most of what we tell him and he tries hard to express himself. If he loses all that, it would be tragic. He is already developmentally a two year old. We can't take any more of that away from him.

So we disheartendly continue to wait.

Basics of Ammon's MEG test on 6/18/2010

There are two major clusters of seizure activity in the left median and frontal areas of Ammon's brain. And he also has some transient seizure activity on his right side. Of course the neurosurgeon is at a conference in Cleveland but the file is on top of his desk ready for review upon his return.

The seizure clusters are right in his language areas and also other high functioning cognitive areas so they will very carefully review the risks of removing those parts of his brain.

We are on track for having surgery or the Vagal Nerve Stimulator implanted before school starts and the baby comes. Keeping fingers crossed we stay on track. Still don't have specific times for surgery but we are getting closer.

Ammon's MEG results are in!!

AT LAST. After nearly 5 months of waiting (it will be 5 months on Saturday), Ammon's MEG results are in. I got a call from our neurologist's nurse not but 5 minutes ago. We have an appointment with him on Friday and are leaving tonight to fit in all day an Shriner's tomorrow with Caden and Lan and then Friday at Primary Children's with Ammon. Hoping there will be enough time for the neurosurgeon to consult with our neurologist before Friday at 9 AM so that we don't have to make another trip up and WE CAN PLAN A SURGERY AND GET ON WITH OUR LIVES. So we can give Ammie his life back.

The nurse tried really hard to give us some news of it over the phone but said she couldn't understand any of it and will have it leave it to the doctors.

THE BOY WHO SEES RAINBOWS

Knowing Ammie has changed the way I view the world. Did you know that we are surrounded by rainbows? I had never noticed until Ammon came into my life and made me aware of the colors that permeate our world.

Ammon can see the rainbows in a bag of marbles, in any water, in the twilight sky and in his dreams. I can tell the latter because of the giggles that emit from him during his sleep.

Here is a child whose mind is literally filled with storms, storms of electric energy that interrupt his brain and cripple his life BUT he sees the rainbows. What a gift for him, for us.

The other day I had to reprimand him and I hurt his feelings. His face crumpled, the weeping began. And through his tears he beseeched, "Ammon rainbow....where is it? Where is it" He needed a rainbow to bring him some happiness. May I always look for the rainbows.

Now, if he could help us find the pot of gold at the end too....

AMMIE KNOWS HIS LETTERS

AMMIE KNOW HIS LETTERS!!! This was one day I never thought we would see but alas, miracles happen. Its like a light just went on in his brain injured head and the alphabet makes sense to him. All the hours spent over the years practicing writing them on the steamed up bathroom mirror is paying off.

Not only can he recognize them (although K and X are ones the seems to be extra tricky and mess him up sometimes) but he can write them. The letter "E" has about 5 extra lines in the middle but...LOL!~

Still no word on... his brain mapping test. We got the $17,000 bill 3 months ago...still no results to report