So we went over today to see Dr. Lachhwani, the Epileptologist who has basically been the Quarterback of Bennett's case ever since we transferred his care from Nationwide Children's Hospital of Columbus to Cleveland Clinic.
Appointment scheduled for 11:00 AM, and we finally saw him around 11:38 AM. Because of this I do not bitch. First of all, shit happens, but secondly because of how quick he is to act and react to things.
He asked us about all we were up here to do. At this point we were supposed to have the following done at the 6 month pre-operative milestone:
2. Blood Work
3. Neuro-Psychiatric Follow-Up
4. 2Hour Follow-Up EEG
5. Surgical Follow-UP
6. Oncology Follow-Up
7. Epileptologist Follow-Up
Yet, as he observed on the appointment chart, that there was no EEG, no Neuro-Psych and no Blood Work scheduled. This annoyed him. He knows we come from a distance and thinks someone should have done a better job on their side to make sure we got the appointments that we needed in one block.
We told him we thought so too, especially since we have 3 things all in a row tomorrow, and only one thing, our meeting with him, today.
That just won't do, he said as he picked up his cell phone and started making calls. He got us in to do the EEG at 1:30 PM, and the blood draw and lab work for after 4. That fast. Amazing dude. Liked him from the beginning, in case you are only a recent reader of this blog. It's why I don't give a shit if he is three hours late for an appointment.
He does make stuff happen. Neuro-Psych was out...not enough time. But 2 out of 3 ain't bad.
So that's what we did. The appointment with Dr. Lachhwani was just really asking us how he was doing as far as seizures. He hasn't had any, and of course Dr. Lachhwani was very happy about that. As for the learning/cognitive/behavior stuff, he again, like I expect the doctors to do tomorrow, stressed to give it time. To be patient. To be hopeful.
He told us his two greatest assets were the two of us, and he feels like Bennett is in excellent care. He liked that we had enrolled him in a special school for 36 hours of ABA therapy a week.
Anyway, it was like any other Epileptologist appointment. Caution, watchful eye, happiness about aspects of progress, happiness about the lack of seizures, and a stress by the doctor on optimism...that it helps everybody to heal.
I didn't tell him how down I've been of late. Why pee in the dude's corn flakes right there?
EEG was as it always is, as far as getting the leads on. Oy. Screams as if he is being tortured. Which I guess he is. Poor guy. But, then he fell right to sleep and so did I almost in that dark room.
I sneaked a peek at the EEG. I know shit about EEG. But it appeared calmer to me than what I was used to seeing. But, of course, every time the tech clacks in notations and junk I get nervous. But if something is amiss I know I'll get a call soon with a request for us to come in and see Dr. Lachhwani.
After that, sticking the kid while I AND Jen have to hold him down. More screaming. Over quickly. Then back to RMH, some rest...a bite to eat and a trip to Rite Aid when I was told by Jen that the wipes I brought were for cleaning counter-tops and junk and we were out of actual baby wipes.
Hey...I'm a dude. I'm not genetically pre-disposed to know the difference between butt wipes and wipes for cleaning a countertop. I clean counter-tops with paper towels or a sponge, not wipes. Besides, the box said it takes care of 99% of the bacteria...and there's a TON of bacteria in a turd my friends. Anyway...how was I supposed to know?
Tomorrow, MRI which Jen takes Bennett to alone while I stay back, pack bags and load the car and clean up the RMH room and launder the sheets and towels. We meet up after the MRI, with the car fully loaded and parked at the hospital. Then it's an Oncologist Follow-Up and Surgeon Follow-Up. Then head back to Columbus.
Gonna be a long one. Not sure if they will have MRI/EEG results tomorrow or not. Be cool if they did, but I am not betting on it.