Many fast food stops made this trip from North Carolina to Cleveland a bit easier than having to prepare those nasty ketogenic meals along the way. Most of the time anyway. There was one particular stop that ended with a ball of napkins and french fries flying across my field of vision as I pulled out of the parking lot. The remaining fries struck me in the back of the head one by one as I pulled onto the freeway. The kid's got aim, that's for sure.
Although the diet is just an unpleasant memory, the new drug interactions previously recounted here were in full force all the way down the highway. By the time the flying fries appeared, it was actually funny. For awhile. Not long. In fact, last night was one to forget for sure. Which is exactly what I plan to do beginning right now.
There was a wee bit of confusion Monday afternoon as we arrived at the hospital all ready for Spike's admission. They wouldn't have him! Turns out we were scheduled for PRE-admission on Monday and admission on Tuesday - except that changed also and we are now scheduled to simply arrive Wednesday morning. That was some serious lack of coordination going on combined with too little information supplied to us - but that's all behind us too so let's move on.
Spike met with with his neurologist this morning and I finally got to ask, and insist upon an answer to, the two questions that have been on my mind for more than a week. What, exactly, were they planning to do in the operating room and why do they keep patients on drugs that don't work?
The plan for the OR seemed simple enough. The team decided to go ahead with the SEEG I described in excruciating detail last week. They believe they have gotten all they can from regular EEGs and that the depth of the suspected seizure focus argues against subdural grids. Besides, SEEG is less risky in many ways than placing subdural grids. These are all points I agree with given my extensive medical background. That and a couple nights with my nose buried in neurological research studies.
Of course, there is one tiny change in the plan as a result of this decision, hence the audible reference. We came to Cleveland primarily due to the reputation of the neurologist and the neurosurgeon. The SEEG procedure, however, is done only by a different surgeon. Not only that, he who first goes into Spike's brain has dibs on future surgeries since he's been there and seen that. Switching surgeons at the last minute is unnerving to say the least. More on that in a moment.
As to why Spike has to stay on anti-epileptic drugs that don't work, well, the answer is a little murky. As I suspected, there is a fear, apparently backed up by some evidence that must be truly horrifying, that the drugs, while not effective in controlling seizures do, in fact, prevent even worse seizures. That's a long, complicated sentence. I imagine un-medicated seizures are even longer and more complicated. There are also cases where once a medicine is removed, the patient goes into something really nasty called status epilepticus which is basically one non-stop seizure. Life threatening for sure. While no one wants to risk that, the likelihood of it happening is unknown since, well, no one wants to risk that.
I did succeed in getting the good doctor to reduce his medications slightly more quickly than planned. This resulted from respect for my deep medical knowledge - or perhaps just because the doctor witnessed ten minutes of what side effects can do to nearby equipment, supplies, walls and people - and I wasn't leaving until I received an accelerated schedule. Thanks for the assist Spike!
The doctors at the Cleveland Clinic are quite busy and do not spend nearly as much time with us as the Duke team. It's not that the Duke team has the time. Rather, I am more familiar with the facilities there and know how to block the exits. Since I knew our time was limited, I quickly asked the most important questions and, as the doctor made all the usual "it's time to scram" motions (looking at watch, neatening papers) I threw one last curve ball.
"Spike, do you have any questions for the doctor?"
To everyone's amazement, Spike stopped thrashing, kicking and destroying and sat up calmly and in the most adult voice ever said, "Yes, I do."
"Go ahead Spike," I told him, curious as to what was going on inside that constantly somersaulting brain.
"Can I have that brain?" he asked, pointing at the model the doctor had been using to show us the suspected site of seizures.
I found that hilarious but it did signal the end of our appointment. He didn't get the brain.
Following a half hour break, we headed up to see the new neurosurgeon. New to us and Spike's case was new to him too. Things were changing quickly, really too quickly for comfort and we still had a full day of pre-op appointments for whatever the op turned out to be.
After a long wait with Twitchy Fidget doing his thing and driving me to look for some spare phenobarbital for myself, the surgeon's son came in to tell us Dad would be along in a little bit. Ok, not really, but the doc was young, really young. I think he dyed a few strands of his hair gray just to look a little older. At least his knowledge would be up to date as there was no chance of it being out of date.
I asked for a nurse to take Spike out of the room so that we could have a very focused conversation. That was apparently a new request by a family ... and probably one they won't honor again. I think several nurses may have put in for retirement following his appointment.
The doctor very patiently explained the whole procedure and the reason for doing it. Typically, I would have fast forwarded through most of the explanation as I know way more about this stuff now that the average medical student. In this case, I wanted to make sure he knew it too. Which he did or at least he had read the same articles that I found online.
I admit I am being a bit unfair. The doctor, while youthful, is one of the few (perhaps the only) surgeons in the U.S. who performs this type of operation. Since the procedure uses robots and all kinds of real time technology, it's good to have someone from the video game generation at the controls. Now that's for the SEEG. The actual brain resection, the removal of brainy bits, is a different operation and I want hands that have done it many times working on Spike. So I asked the uncomfortable question.
"How many resections have you done on juvenile patients?"
"At least 500."
"Welcome to Team Spike!" I didn't really say that but I certainly thought it. He graciously accepted comments about his youthful appearance as compliments and then went on to explain his experience with resections and SEEG procedures in detail. He also described every one of the complications from these procedures. That didn't take long as there were only two on his record, both minor with the patients going on to very good results. From my research, I know the general complications from these procedures and, I have to admit, this guy is good. Very good.
I asked if we could think about it overnight and do the surgery on Thursday if we decided to go forward. He said we could and he would figure out how to fit in Spike after his two scheduled SEEGs on Thursday.
"But aren't these 5 to 6 hour procedures?" I asked.
"Yes, of course, but we can find a way. Tomorrow, Spike would be my only procedure as I do not usually operate on Wednesday."
It doesn't take a brain surgeon to figure out that a fresh surgeon is better than an exhausted one. That's good, because I'm not a brain surgeon. Yet. We decided to go for surgery on Wednesday.
The last issue concerned the time between placement of the SEEG probes and final resection surgery. Typically, they wait two months after removing the probes to perform the resection. The doctor explained this was to reduce the risk of infection. Such risk goes up the longer the probes are in and they don't want to open up the brain until they are sure any surface infections are resolved. I explained that the probes would not be in for long since Spike is so accommodating when it comes to supplying seizure data. I also said that I felt it was appropriate to weigh the risk of infection against the reality that Spike would have 2,000 additional seizures while waiting two months. Once the surgeon realized just how data rich Spike is, he agreed that resection could follow very quickly - perhaps in just a few days if the data points to a nice, safe, well-defined focal area.
With that, it was time to rush down to radiology for Spike's pre-op MRI. Poor little guy had not eaten since dinner the night before and now it was afternoon - yet still no complaints from the little trooper. He was too busy climbing the walls anyway. Spike tried to help the nurses take his vital signs. They should call them vibrating signs in his case because he was just buzzing all over.
Eventually, the door opened and a doctor walked in, announcing, "Hello, I am the anesthesiologist and..."
"Shoot him in the butt with a tranquilizer dart - NOW!" I screamed, holding him over my shoulder and exposing his derriere so she could take a shot. Of course, she wouldn't do that and had me sign all sorts of things that I didn't bother to read because I really, really wanted them to gas him right away. She went on to explain that they would give him a mild sedative through a mask, if he was ok with the mask and didn't freak out. If I thought he would have a problem with the mask, they could give him a pre-sedative sedative in a drink first to reduce his anxiety and ... enough! I told them to just put the IV line in without any sedation. Spike was so used to IVs that he could assist. He didn't need pre-sedation and he certainly didn't need a pre-sedation sedative! I asked what that was anyway and was told it was Valium. The chaos in my head stopped just long enough for me to make it very clear that he would go straight through the walls if they gave him anything like Valium. Been there, done that, still paying the repair bills. The kid does not have normal reactions to most drugs.
After approximately forever, maybe ten minutes, they said they were ready for him in the sedation room. I had him there and on the gurney before they finished the sentence. So much for patient transport. Dad's shoulder is a lot quicker than a wheelchair.
Spike showed his aversion to the mask by clamping it over his mouth and inhaling deeply. Either he was going to do it or I was because the medical team just wasn't moving fast enough. They were taking time to check who he was and what he was there for and all that safety stuff. Save it for surgery, just knock him out!
Ah.....peace and quiet.
An hour later, they buzzed me and I returned to go through the long ritual of bringing him out of sedation, knowing that as soon as he did wake up it would all start again. Nothing to be done about that as he had yet another appointment, this time for pre-surgical clearance from pediatrics.
Spike finally woke up with his usual threesome of anesthetized seizures (the kid just ain't normal) and we rushed him over to pediatrics. Yet another doctor patiently took his life history and examined him. This is the closest we've come to having to call an emergency code - but not for Spike. He kept grabbing the stethoscope and I thought for sure he would strangle the doctor - who showed amazing patience throughout (that goes with oxygen deprivation I guess).
Lately, Spike has had a real problem responding to questions. It's not that he doesn't understand them, he just doesn't care a whit about responding. The pediatrician tried valiantly for several minutes and then pulled a trick out of his black bag.
"Would you like me to talk like Donald Duck?" he asked and gave a dead on impression of Donald.
For the first time in days, Spike, who is a huge Mickey/Donald/Goofy fan, was laughing and totally focused on what someone (or some duck) was saying. His eyes just lit up and ... uh oh. Yeah, the good doctor was rewarded with a a seizure for his efforts. He felt really bad but I assured him, from my deep medical background, that quacking was not a seizure trigger. Spike recovered immediately and was promptly declared fit for brain surgery!
A quick trip to the in-hospital McDonald's for a well earned ice cream cone ended the day as the medical team decided that Spike could simply arrive at 6 AM as a walk in patient rather than spending the night on the ward.
Nothing is going quite as planned but it is going forward. The rapid fire sequence of events and decisions today was a bit unnerving but I'm not sure that any different decisions would have resulted from agonizing over the details. There comes a time when you simply must put your trust in the team or go home.
We trust the team and sometimes when the game starts going sideways you have to call an audible.
Game Day tomorrow.