Wait, let me get some more coffee...
OK, that's better. (Even if it is only decaf, I think it is a mental thing.)
So Mighty had various doctor appointments last week: check-up on Monday, Doc. phone calls Tues and Weds, another hospital test on Thurs, and circumcision on Friday. (He is a busy guy!)
Monday was discussion about his meds and what to do since he was still having seizures. The Doc. gathered our information, took a blood test to check his phenobarb levels and eased our fears some. She let us know that she is in contact with the Neuro's at Children's and that they are sort of coordinating care. We changed his meds to 3.5 mL of the phenobarbital twice a day (8am, 8pm) in hopes that he wouldn't pull a seizure right before his big dose in the evening like he had been doing sometimes. (It had been 2 mL in the morning and 5 mL in the evening.) Oh, and he weighed 11 pounds on Monday.
Tuesday evening the Doc called to check in before she contacted Children's again. Mighty's blood test came back (checking on the phenobarb levels) and found his phenobarb level to be on the higher end (30) of the recommended levels of 20-30 that are thought to be high enough to stop seizures. Of course Mighty had had another seizure or two since the blood test at our appt. on Monday - the Doc called them "breakthrough seizures", meaning having seizures break through the medicine.
Wednesday the Doc called back and between her and the Neuro's they were starting to think that maybe it wasn't seizures after all, and maybe they needed to look into the GERD (reflux) idea again. OK, here we go again. So calls to see when the Pediatric Radiologist would be in town to do an "upper G.I." on mighty (swallow some barium and take pictures as it is going down and see if it comes back up). Wait a little more. Wait, she will be in tomorrow (Thursday) and she has some appts available still. Call as close to 8AM as you can to get an appt. Of course I was looking forward to going to MOPS on Thursday and try to resume some form of normalcy, but Mighty is a little more important!! On Wednesday night (8PM, 11PM, and 4 AM) for three back to back feedings, Mighty had seizures. Of course, right before a possible new diagnosis, I was really hoping for an answer.
Thursday morning at 8 AM I called for an appt. The test would be right in the middle of MOPS, 10:30 AM, guess I can't have normalcy yet. Mighty was a big trooper and did the test just great - took that chalky stuff right from their bottle and everything. It only showed "normal" reflux, something the radiologist wasn't concerned about. At one point during the exam she did say "Oh here it comes, it looks like he is having a little trouble clearing it, oh, OK, he got it." So apparently that was normal, but you see he doesn't have the seizures (are we back to saying episodes now?) after every feeding, so was this just one of the times where it wasn't going to happen anyway? So didn't talk to our doc on Thursday after the test (her day off) but I was so disappointed that there wasn't overwhelming evidence that this was reflux and it was another test that was basically inconclusive, or another test without answers, or just without answers I was looking for.
Friday I took Mighty in for his circ. (at this time, no seizures since Thursday at 4 AM) and the doc and I talked about our options as she was writing out the prescription for the reflux med. She kind of agreed that it did show some reflux - normal or not, and since his ~episodes~ didn't come after every feeding, it was possible that this was just a light reflux time, we could try the med as it shouldn't hurt anything else. (Oh, he was then 11 lbs 12 oz!! gained 2+ pounds in less than 3 weeks...and his circ went fine, though he peed on them before and after! hee hee)
So, now Mighty Mouse is on the Phenobarbital 3.5 mL twice a day, and the Ranitidine (generic Zantac) 1 mL three times a day.
Mighty Mouse has not had a seizure since that Thursday morning at 4 AM. I don't know if it is because I am being extra vigilant at burping him, trying to relieve pressure in his tummy. We had noticed a burp from Mighty after the three back to back seizures from Wednesday night/Thursday morning and started thinking that was possibly causing problems (again, you know, in our vast medical knowledge...) :-) I asked the radiologist about gas pressure being a possible cause of the "apnea" and she said something about pressure on the vegas vein possibly causing issues. Also, our doc said the reflux med could help with the gas pressure as well.
So I guess now we are again in a waiting game. (See Michael's yawn?) What is really helping him not have the seizures/episodes? Is it the meds? Is it the extra vigilant burping? Has he just grown out of the whole thing? It hasn't really been that long, but even going one day in between seizures felt refreshing... this 4+ day stint is a downright vacation! Though we may be watching him more now for fear we are missing something.
Anyway, keep praying, I'm sure it is working!!!