No, not THAT Motor City Madman...I'm talking about the NEW Motor City Madman, a fella by the name of Dr. Harry Chugani.
I've written a little about the visit to Children's Hospital of Michigan and Bennett's evaluation with Dr. Chugani, now I'm ready to write a lot. I've had some de-compression time, some thinking time, some feeling time, and I think I can start putting some of these things down on digital paper.
You know what's funny? One of the biggest stumbling blocks I have had even starting this particular blog is that I did not know how to structure it. Do I go full linear mode, and go over things from start to finish? Do I do it in parts? Stretch it out over a few days? Purge it all at once? Maybe do a sectional thing, separated by theme? Then I sort of just said FUCK IT...just start writing, you over-analytical asshole.
So here I am. Just writing.
And just about the Chugani meeting. I have lots of other observations and thoughts about Detroit, DMC, gambling, smoking, family and I did take some nifty photos of Bennett, but I'll deal with all that later.
Back to the appointment with the good Doctor.
If you look at it simply from the perspective of how I defined the goal of this visit, we achieved our objective. Back on last Monday I defined our goal...We hope to have Dr. Yoda (Chugani, I am done with the nicknames for now) evaluate Bennett's condition and confirm or challenge the local diagnosis of Focal Cortical Dysplasia with Symptomatic Infantile Spasms, in the hopes of determining what the best course of action is for the treatment of his condition.
If you look at it from that angle, the trip was a success. We did achieve our goal. We did confirm the local diagnosis, he does have the dysplasia in his left temporal lobe, and we did determine what the best course of action is for the treatment of his condition, for the short term anyway.
There were a lot of wrinkles added to the whole thing that we didn't expect.
I gotta be honest. Despite the stated goal and my much publicized VENEER OF STRENGTH AND COURAGE, I wanted to walk in to Dr. Chugani's office, see the light emanating from the heavens, see the clouds part, hear the sweet sounds of the angels singing, see the well-endowed nurses in their tight-fitting (OOPS...wrong fantasy...where was I?)...anyway, my point was I WAS hoping for a more clear cut result. I was hoping for a miracle I think.
I wanted to hear something like...
Well, hello there Mr. and Mrs. Lilly! And Bennett! Greetings! Oh my yes, what a charming lad, let me see his chart, hmmm...look at his scans...hmmm, yes...why, of COURSE we can fix him right up! Just step over here to our Focal Cortical Dysplasia Removal Machine and Buffer...that's it, yes, right there...now let me shut the cabinet door, turn on the switch and VIOLA...here's your boy...FULLY CURED. Oh yes, we also thickened his hair, made his eyes a startlingly attractive pale blue, made him taller, more graceful, gave him the world's largest penis and he can now speak 17 different languages. That'll be $1674.32. NEXT!!!!!!!!!
Life is not like that. Admit it though...sometimes you WISH life was like that, don'tcha? Well, maybe not, but with your child, you do...or at least you want it to be a little easy when it comes to their health and well being.
But no, that was not what we got.
After the PET Scan, we went back to the hotel and it was wild, Bennett was just freaking out, never seen that before, all related to the drugs used to sedate him. He was loud, flailing about, it was a real effort to get him to the hotel without causing major scenes wherever we were. After that, it was Crash City. Jen slept, I wrote a quick blog in the dark, I then spent the afternoon after that gambling and losing (did I mention the swank casino hotel we stayed in? More on that in anothr blog) and drinking many a Starbucks concoction.
That night, we stayed in since Bennett was so incredibly woozy. When he was awake he would try to walk but take a few steps and go right into the wall or floor. Not good, he needed to be VERY tightly managed. He had slept most of the day and after being awake for maybe an hour or so and eating something he slept for about 16 hours straight (through the night). The next day we got up, packed our stuff, had a nice breakfast delivered to us in the room and packed up the SUV to go over to the hospital.
We got there a bit early, but everything moved along fast, and after a while we were in an exam room being seen by one of Dr. Chugani's residents or fellows, not sure who she was actually. Answered some questions (you get used to answering the same questions over and over, parents of any sick child, you know what I mean) and she examined Bennett.
She left and later returned with Dr. Chugani. Dr. Chugani was a friendly doctor, with an engaging and warm presence, but certainly not one to idle or engage too long with superficial small talk, and after introductions he got right down to business taking a look at Bennett. I'm not suggesting this as anything negative about his bedside manner, because I liked him a great deal. As a matter of fact I loved the fact that he was very friendly and engaging but he was MOST interested in getting right down on his knees in front of Bennett to take a look at him.
Bennett was well rested and in great spirits, which was good for everybody. He was super interactive. Dr. Chugani was very surprised, he later admitted, by this. As he later explained it, Bennett did have the left temporal lobe Cortical Dysplasia, it was confirmed in the PET scan and it appeared in that scan very much like it did in the MRI. What surprised Dr. Chugani was the fact that the PET seemed to suggest a rather large area in the right side of Bennett's brain that also had a malformation.
Basically, Dr. Chugani explained that when he looked at the data, the EEG, the MRI and the PET Scan prior to walking in that room, he was expecting to meet a very 'low-functioning' boy afflicted with Infantile Spasms. What he found instead was a boy who he would classify as 'high-functioning'. In other words, he thought that the RAW data, as it stands, MAYBE suggested a multi-focal epilepsy, something not able to be corrected by surgery, but Bennett's behavior and development suggested a single focus.
He said that if he had met Bennett first and NOT seen the data first, his very first reaction would have been to surmise that Bennett was a single-focus case. It was puzzling to Dr. Chugani quite frankly, and he admitted as much. In fact, he stated that he my even be 'over-reacting' to the area on the right side that appeared abnormal, since it might not even be something that is causing any issues inside Bennett's brain.
But it is there, that malformation on the right side. I saw it on the PET with my own two eyes. But as one of my dear IS Sisters reminded me over the weekend, a PET Scan shows hot spots, not the timing of said hot spots, so it is very possible that the appearance of the malformation on the right side is some residual effect caused by the discharge from the left temporal lobe. She referred to it as a secondary generalization.
Crazy to sometimes think I am writing about my son here...all these terms, these medical definitions. Nobody should have to learn about this stuff when it pertains to their children. Nobody.
But my friend's analysis makes some sense...especially considering what Dr. Chugani said during the meeting, that the key to ultimately determining whether Bennett could achieve Seizure Freedom from surgery would be to study him further using EEG technology, for perhaps a 2-3 Day or longer period. (Joy....NOT.) This might help to give more data to determine TIMING and FOCUS of the seizure activities and see where they originate specifically.
So ultimately he didn't say that Bennett was NOT a candidate for surgery. He also didn't say he knew for certain that he WAS. He was cautiously optimistic and seemed to lean towards Bennett having a very good chance of getting this all worked out surgically at the end of the day. But he felt that the only way to be sure was to have some more testing done.
He suggested we proceed with this specific plan:
1. Start Bennett on Vigabatrin as soon as we receive it from the Canadian pharmacy (it is not currently available in the US, even though it has been re-approved by the FDA, the paperwork is still not final on that).
2. Monitor Bennett's reaction to the Vigabatrin over the course of one month and each week increase the dose.
3. If Vigabatrin stops the seizures, keep him on it for a while, have him tested via EEG and see how he is doing in there.
4. If Vigabatrin does not stop he seizures, decide where we intend to have any kind of surgery and plan pre-surgery evaluative testing to be performed there. So if the insurance allows it and we decide we want to have any kind of surgery in Detroit, have the Detroit team do any of the further testing needed to confirm focalization of the seizures. If we decide it is going to be Cleveland we should have the testing done there.
He said this was important because the people involved in the surgery (should it be determined that he is eligible) should be managing any final stages of testing. I am not 100% sure why on this, I did not follow-up and ask. It will be tough to get a 3-day EEG done in Detroit, but not impossible. It just means even more time away from our jobs which is very difficult on our job performance, higher costs to get there, etc.
Why would any of that matter? It wouldn't, if this were a discussion about a surgery, but it is a discussion about a video monitored EEG, which I just don't understand why it cannot be done closer to home so it is easier on Bennett and easier on surrounding family. I mean, isn't it just the results and study of the EEG data that matters, not WHERE the EEG takes place? This part confuses me.
Anyway, there it is. The New Plan.
Seems fairly optimistic doesn't it?
Then why, oh WHY, do Jen and I feel like total Grade A Pasteurized Shit right now? Why do we feel like we are dealing with an even greater weight that we are struggling to lift up over our shoulders?
I don't know, we can't figure it out. We should be hopeful, but we are not. We should be energized about a plan, we are not. Can't figure out why. Can't be a sense of dashed hope, because it ISN'T a hopeless situation. There is hope for Bennett. Maybe it wasn't the clear-cut, definitive answer that we were looking for, but it was absolutely, 100% not a NO WAY IN HELL either. In fact, it was much MORE of a THERE'S A VERY GOOD CHANCE THAT BENNETT CAN HAVE SURGERY AT SOME POINT AND HAVE A CHANCE AT SOME FAIRLY NORMAL DEVELOPMENT.
SO why do we feel anxious, why do we feel so lost, why are we so depressed? And even more startling is that we are both feeling unusually angry this weekend. Especially at each other. We are at each other's throats in a way we have not been in a long time. We are clearly divided. It is very alarming.
And the bottom line is that I can't explain any of it, haven't figured it out. At all.
Maybe because when you read the final report analysis it seems very stark. Very hard to digest.
This is an abnormal cerebral glucose metabolism study suggesting a focus in the left medial and posterior medial temporal region. This would be consistent with a malformation in this area as seen on the MRI Scan. However, there are also other abnormalities on this study, including the bilateral parietal and bilateral temporal cortex. Portions of the parietal cortex show poor definition if gyri and should be further correlated with the MRI Scan to rule out focal lissencephaly. Further EEG correlation is also required.
Anyway, that was our visit with Dr. Chugani in a rather large nutshell. Bennett is to start Vigabatrin now, and we started him on it Saturday morning, wasting no time at all. He is not, I repeat NOT, seizure free from the first three doses of the Vig. I do not know how it works, but yes, we were also hoping that he would take his first dose, turn to us and say something like...
Hey, thanks for that...yup, I'm all better. DAMN that was a freaky buzzing weirdness in my head. Glad THAT'S over. Hey Pop, pass me that bottle, I could use a shot of that milk. Yeaaahhh...that definitely hit the spot. Say, you wanna watch some Spongebob Squarepants?
But yeah...life is not like that. Even if you wish it was.