I am merely putting this post here as a placeholder as we get news about the day. Sort of a liveblog of the parade of doctors as they come out. Bookmark this page and I will update as I can.
2:06 p.m. – Armand officially went back to the OR, with Lindy accompanying him in her Stay-Puff outfit. I settled into the family waiting area, and she came out shortly. Apparently he did great when they put the mask on him; usually he cries until he goes to sleep, often left in a Han Solo-in-carbonite frozen pose with his mouth open in mid-cry. I sent Lindy over to our usual surgery day lunch spot, a Bruegger’s Bagel spot about a block away in case one of the doctors comes out while we would be gone.
3:10 p.m. – Haven’t heard anything yet, although he should be on his way to the MRI with everything else done. Lunch was good, though.
3:20 p.m. – The eye doctor Dr. Bothun just came out, said that structurally his eyes look great. Slight possibility of a little pressure on the right ocular nerve, but he’ll know more about that once Dr. Whitley is done with the lumbar puncture (which is going on right now — must be running a touch behind). They did take some pictures which would show anything more subtle that wasn’t caught in the exam, but overall Dr. Bothun feels they look really good.
4:14 p.m. – Our final appointment for the week has been scheduled for tomorrow with the neurologist, Dr. Karachunski. Also, if you look to the right of this post, you’ll notice that we are already being scheduled to return here to Minneapolis the week of August 25th. No update on his condition at the moment, however.
4:44 p.m. – Dr. Soraya Beiraghi, who we found out is the Director of the Division of Pediatric Dentistry here at the U of M, came out to talk to us about Armand’s mouth. She noted that he does have quite a bit of gum inflammation and lots of plaque, but no cavities. She recommended that we use chlorhexadine to swab his gums and make sure to brush better than we have been, despite Armand’s protests. This should help with any mouth pains he has and should slow down his lip biting.
5:55 p.m. – Dr. Whitley just came out to talk to us and let us know that everything is fine. He’s in recovery now and should be waking up soon. We scheduled a time to meet up with him and with Dr. Utz tomorrow for an “exit interview” to go over what they’ve seen, Armand’s labs, finalize any medication changes, and make plans for coming back in August, etc. Armand’s CSF pressure is 15, which is well within the normal range, and good sign not only as a GM1 patient, but as a GM1 patient taking minocycline. The lack of high pressure means that what Dr. Bothun was seeing in his eye exam was probably just how his ocular nerve has grown naturally and nothing to be concerned about.
6:10 p.m. – He’s awake and recovering just fine. He was a bit cold when they wheeled him in, so they put him in something called a “Bair Hugger“, to hug my little Bear and get him warm, along with some extra blankets that gave him a bit of a nun-like look. No crying this time, he just looked around (the lights were off because of his pupils being dilated for the eye exam) a bit, took his time. Dr. Whitley came in to check up to make sure everything was okay before they let us go.
8:18 p.m. – We’re back at the hotel safe and sound. We have a full day tomorrow, but may actually leave on Thursday to avoid some potential crap weather on Friday and Saturday.