Dear Son Update

Things don't seem to be going particularly well right now. Yesterday Dear Son had a terrible seizure in the morning. I had started his feeding and went in to put in my contact lenses and when I came back, he was having a seizure. I used the magnet to activate his vagus nerve stimulator twice however the seizure escalated so fast, that I had to take immediate action. I can't remember a time when it escalated this fast and it made me quite nervous. I gave him some Diastat, an emergency rectal medicine that I keep in his nightstand. It usually works right away. When that didn't stop it, I debated whether I should call 911 or give him his morning medications. I was worried that if I stopped to call 911, by the time they got here and got an IV in and then got him to the hospital, twenty minutes would have gone by and that is too long when things are moving this fast. I ran to the kitchen and got his Phenobarbital and Valproic Acid meds in the syringes and gave him those via his g-tube. From there, I ran back and got the rest of the seizure medicines ready and gave them to him. I opened the garage door and my apartment door for the paramedics and started to call 911 however the seizure seemed to be stabalizing, or rather it wasn't escalating. That is how I judge whether or not I should call. Fortunately, all of the medications started kicking in and I didn't have to call. The seizure lasted twenty five minutes from the time I saw it. It was a very stressful way to start the morning let alone the minute you get out of bed. But more important was Dear Son; I feel so bad that he has these seizures. He really is a sweet kid. I wish things were different for him.

I spoke with the pediatric neurologist yesterday and we will get seizure levels drawn on Monday morning. Dear Son is crashing right about the time his morning seizure medicines are due which leads me to believe that they are depleted by morning. Back in 2001, Dear Son had early morning seizures and we learned after taking some levels that he was a hyperutilizer of his medicines meaning he metabolizes them quickly. At that time, he only received his medications in the morning and at dinner and after that, we had to add the midnight medications. He now receives six seizure medications given every six hours.

I have not felt that things are going very well. He seems to be deteriorating faster to me. I do see that at different times things seem to deteriorate quickly and then he seems to stabalize for a while. At the present time, I think he is deteriorating physically however I am not clear as to whether the progressive neurological disease is causing the physical deterioration or if it's the seizures, although one might argue that the progressive neurological disease is causing the seizures hence the physical deterioration. I doubt it really matters which came first.

I am quite concerned that he is having far more seizures than what I am seeing. I took him outside to sit this afternoon and decided to transfer him to a rocker outside from his wheelchair. He likes to rock and I normally do this inside by using a hoyer lift. Anyway, I moved him to the rocker however he couldn't sustain a sitting position. He kept having head drops and then he'd try to support himself and he'd have another little seizure and finally he was having so many within a five minute period that I had to transfer him back to his wheelchair. I have to wonder what is going on in his brain. A typical EEG for him is quite abnormal; nearly all show electrical activity six seconds of every minute twenty four hours a day.

What is more troublesome is what may be happening when he is sleeping. I laid him down for his lunch today and he usually takes a nap while his feeding is going. I checked on him a few times as I normally do and things seemed o.k. however when I got him up, he had dried tears and dried saliva on his cheek. The only time I see a tear or tears is when he has a seizure.

I am very concerned and a little nervous right now. Dear Son's Dad took him tonight and will take him for the lab test on Monday so I can work. I do not feel he is very stable right now and would not be surprised if he had an emergency. I packed the Diastat just in case and Dad has everything he needs, just in case.

Once we get the lab work done, I suspect he'll increase the medications again.

On a different note, I apologize for the delay in posting. Summer school ended on Thursday so I need to focus a little more on Dear Son since he is total care. He also continues to grow taller and bigger and that is making the care more physically demanding and wearing me out a little faster. He is getting much heavier to push in the wheelchair so everything together, just raises the bar a little bit. The next four weeks are always the hardest for me since I care for him 24/7 and don't have any respite care this year due to the state budget cuts.

Thank you as always for all of your comments and suggestions for the Make a Wish trip. They were really helpful.