Day 10

Day 10 ... well, actually, let me start with night 9.

Night 9 James was very irritable. I hadn't seen him act that way in a long time. I'd get him to settle down and stop fighting me and then eventually he would doze off. I'd walk him into his room, lie him in his crib, hook him up to his pulse/ox and very quietly sneak out. Not even 5 minutes later he'd start fussing all over again. We did this little song and dance until about 2AM. I think he eventually just wore himself out from all the crying, arching, and hitting.

I'll now consider it Day 10...

At about 4:30, Mike and I were woken up by a sound that we hadn't heard in awhile. The high pitched beep from the pulse/ox. We rushed downstairs and James was in the middle of a seizure where his oxygen level dropped down to 70%. He came out of it on his own without the use of emergency meds but did have some minor seizures that followed most likely a postictal state. We brought him up into our bed and he did manage to fall back asleep for a few hours.

The rest of the day was pretty run of the mill. He did have some of his neurological fits and his final seizure count was at 17, not including the tonic-clonic and it's postictal ones. I'm not sure how they want me to count that - or if they want me to count the postictal twitches. I made a note of it in his binder.

SO...

Pro/con combo : had a tonic-clonic seizure but it was only one, no relapse, and he came out of it on his own. He did not require use of Diastat and the postictal stage was short - maybe 10 minutes.

Day 1

Today started off reminding me exactly why my husband and I are subjecting our son James to such a strict and regimented diet. Mike and I were sound asleep upstairs at 4:30 AM when we heard James' monitors start blaring through the baby monitor in our room. We both jumped out of bed and hit the ground running.
 It was apparent as soon as we were crib side that James was in the midst of a particularly nasty tonic-clonic seizure. The oxygen was cranked up high and we rolled him on his side, all part of the usual routine. We both knew this one wasn't going to end easily and would require his rescue medicine. To watch your son continue to shake and convulse even though he has stopped breathing is hard enough, but to have it start all over again once it has ended is just utterly crushing. I honestly feel as though I die a little bit every time a seizure racks his 26 pound body. I wouldn't wish this upon my greatest enemy. Nobody deserves their own body to betray them relentlessly.
Afterwards, we got ready and finished packing up everything that we'd need for our 3-5 day stay; gram scale, compounded medications, books, etc., and got in the car to head into Boston.
The ride in was pretty much what you would expect on a Monday morning, bumper to bumper but moving along nonetheless. Parking was a breeze for once and we set off to find patient admitting in the Proger Building. First in line and all checked in ... with nowhere to go. Hurry up and wait I suppose. We waited for a bit over in the Neurology department for James' room to be ready for him up on 7.
Once up in the room we began to unpack and answer all the usual questions about James. For a 2 1/2 year old he has quite the extensive medical record. He was still quite drowsy from his rescue medication this morning and had been sleeping on and off. Mike stayed and talked to the nurses and doctors for as long as possible. He was due at the job site by noon. He kissed us goodbye and set off to "start" his day.
After he had left, I finally managed to rouse James from his slumber. It was officially time to start his diet! His very first ketogenic meal was eggnog meal. Mmm, tasty. It consisted of 90 grams of heavy cream mixed together with 35 grams of pasteurized raw eggs. It sounds disgusting, because it is, but if it helps James it's entirely worth it. He finished his beverage and I washed everything out in the sink. He seemed to be getting back to his usual self and I thought it would be fun to sit him in his seat and play with the ipad for a bit. He loves playing the games with the peekaboo animals. It's adorable. He had only been playing for 5 minutes when the seizures started all over again.
Another reminder of why we're here that I didn't need. Time speeds up from that moment. It's different when we're not at home. Nurse call button. Doors opening. James is back on the bed. Blue lips. Gray skin. That awful stare. Oxygen. IV. More rescue medications. Back to sleep.
It is now currently 4:33PM and my sweet boy is still asleep while I type. He even slept through being hooked up to the EEG machine. There is definitely unrest in his mind. The spikes, XL spikes, and events are lighting up the screen as though it were the Fourth of July.
He has also slept through phone calls to pharmacies and insurance companies. The pharmacy at the hospital discovered that one of his medicines wasn't compounded correctly and would have undermined all of the dietary efforts. Now the insurance companies don't want to pay because they've already paid for it once. They don't seem to care that James can't take it since it was processed incorrectly.
 I haven't progressed any further with the diet. His next meal is still sitting on the rectangular table at the foot of his bed. Actually, Toni just came in with a new update. The neurologists now want him to refrain from eating until 12 hours have passed from the time the rescue medications were administered. Did you know that fasting was a treatment for seizures back in biblical times? Well, now you do.
 So, plans have changed, again, but we'll roll with it.
 As long as we get where we're going, who cares how we got there?