Day 3 Update and Review So Far

First of all, Armand made it through the surgery today just fine.  No complications as of yet, and he came out of anesthesia better and more calm than he’s ever done before.  However, overall it’s taking longer (he’s still not fully awake, and he was dicharged into recovery almost 3 hours ago), but he was also under for a longer time (he was taken back around 1:45, and taken to recovery around 6).

We have no results yet from the MRI, Dr. Whitley had not yet seen it, but both he and Dr. Karachunksi will see it tomorrow and we may have some idea then.  Dr. Whitley did tell us that he spoke with Dr. Bothan (Armand’s opthamologist), who, while Armand was sedated, had done an eye exam and taken photographs of his eyes.  We were told that he continues to have no cherry red spots; and apparently last time we were here in November there was either a slight substrate/lipid buildup or cranial fluid pressure on one of his optic nerve — that has now cleared up.

On the other side of things, during the spinal tap they measure his cranial fluid pressure.  Less than 20 is considered normal — his was 19, whereas during his last two trips it was closer to 12/13.  This spike, and his current level (while still considered within the normal range and nothing to alarm us) has given Dr. Whitley pause about giving Armand the minocyclin — the drug can raise cranial pressure in patients, and although it is a rare side effect, GM1 patients are susceptible to high pressure.  So we will probably return here to MN in about 3 months, and we won’t start the minocyclin until about a month-to-six-weeks before then, so we can closely monitor his cranial pressure.

After his time in recovery, he was wheeled (with us in tow) up to the 6th floor here to his room set up for his video EEG.  They have a very expensive looking night-vision (I think, we have some low light on) camera to watch him all night, and a monitor showing his different EEG measurements, kind of like looking at a lie detector.  After getting him settled in what is essentially a crib in a spot where the camera can see him, he began fairly restful, and then sure enough, he had a pretty long severe episode.  We basically click a button that triggers an alarm within the readings, so that whoever reviews the video and readings can take a quick look at what happens.  After that episode, he didn’t quite fall asleep, but he did relax for a while.  We are probably going to be here until some time in the morning unless they can’t get any decent data, in which case we could be here doing this for 24 hours.  Our follow-up with Dr. Bothan is tomorrow at 11am.

As of now (9:23 pm), Lindy is giving him some light dinner (avocado and soy yogurt) and then hopefully we can get him to actually sleep (ha!).

I still haven’t gotten any ice cream.

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