Day 3 at Strong, and Some Pics...

Tis Wednesday and I sit, once again, in front of yet another foreign computer. This one, however, has me drooling. It is a Mac that seems to house the entire guts of it IN the huge flat screen, with the most brilliant colors (HD?)... a tiny little wireless keyboard sitting comfortably in my lap and my good ol' Martin Sexton singing sweetly to me, his guitar and voice totally alive. This has turned into a free commercial for Apple, but DANG... this puter is NICE! But i digress...

Today is Day 3 of our stay at Strong. The past three days have been chock full of tests, theories and wires.

Hey there, Bright Eyes!

Monday, as I briefly mentioned in the last post, Henry had a 30 minute EEG study which was followed later that day with a more extensive and longer EEG study. I watched them glue a ton of little metal-capped wires all over his head and then fill each little hole with an electro-gel of some sort. He looked like a baby robot! The EEG was conducted because all the doctors who were on Henry's case suspected, given all the criteria of how things went down on Sunday at Arnot, that seizures were to be suspected. On the "Possible Seizure Check List," Henry had several boxes ticked off. Lifeless: Check. Staring and pupils dilated: Check. Drop in HR and/or O2 Sats: Check. Twenty to thirty seconds of the above, combined: Check.  The EEG study didn't bother me nearly as much as all the WIRES did. They greatly limited the distance between Henry and moving out of his bed, and consequently, ME and Henry moving around. But such is life sometimes. I wiped the frustrated sweat from my brow, took a deep breath, wiped the tears off my cheeks, and bucked up. While i am mostly laid back through all this, I'm also finding, now that Henry is older and more of a little guy with a personality, I'm a bit more impatient. Especially when our presence at this hospital is truly a mystery to begin with. The whole seizure/EEG thing was one theory...

The CAT scan results, from Sunday night, were inconclusive of anything indicative of a seizure or any other questionable activity. What they saw correlates with Henry normally. His brain appears underdeveloped for a child his age (understandable) and there is a thinning between the hemispheres (again understandable, given his cleft history).

All of Tuesday was basically spent in bed, Henry being totally Henry, with wires coming out the top of his head, and getting feeds and napping. Doctors came and went, all hashing and rehashing The Story as They Knew It. A couple times i thought how this would have driven Ron nuts, because it was starting to get to me a little. I literally recapped Sunday's events at least 5 or 6 times to different people. I also ran down The History of Henry a good 3 to 4 times. It's like playing the game of Telephone and being checked on the accuracy over and over.

It was on Tuesday, late afternoon, that Henry figured out how to clap his hands! You could almost see the surprise and excitement on HIS face, let alone mine. I managed to capture this on video today, Wednesday, in the World's Shortest But Coolest Video Ever! :-) It's truly the small things in life, certainly in situations like this, in a hospital, wondering what the hell is going on with your kid, that do it for me!!! I get him to clap now any chance i can. He mostly obliges.



Today, Wednesday, were more "productive" discussions and consults. The neurologists (the most present of the specialists during this stay) informed me that the EEG study would conclude later that day since he had not exhibited any of the blue episodes like he did at Arnot. He did, however, have a bradycardic episode in the early morning hours (a significant dip in heart rate) during his sleep that they wanted to review on the EEG test that was running continuously. They would report that, as well as any other findings, later in the day.

Blasted EEG lead welts! :-(

I had an opportunity to present MY theories to a team of three doctors. The situation presented itself rather nicely. I did not want to feel rushed or, more importantly, feel like I'm the crazy parent that just Googles stuff or "has this friend who..." Instead, I took my time and all three docs (2 neurologists (one named Dr. Augustine) and the ped attending, who actually went to school with Hank's cardiologist in Philly, Dr. Ravishankar!) granted me undivided attention. I had my sources that i read from on my little iPod touch (the best investment we've made in a while!) and then looked to them for their two cents; I was actually a little sweaty and nervous! Crazy. But all three said that my theory was interesting and certainly not without it's place. They explained that the reason it is most likely NOT related to his palate repair has a lot to do with WHAT Henry did on Sunday. The holding of his breath, for 30 seconds, the stare, it's sporadic nature, and that it was 6 weeks after his surgery. If they are going to see breathing complications associated with palate repair, they are going to see it shortly after surgery, and in different forms. It would be the difficulty and struggle to breathe versus the ABSENCE of breath. They appreciated my theory and it was talked though and put on the table, and that was all that i had asked for. I should take this opportunity to say that I've been thoroughly impressed with the staff and doctors at this hospital. I have been THRILLED that Henry's care, in both Roch and Philly, have been SUPERB! We are working with two amazing facilities and it's quite comforting to feel that when it comes to Henry's care!!

I was approached by a doctor about doing a sleep study on Henry due to all this apneatic activity. They said it couldn't hurt and it would really show what he does during his sleep, especially with his breathing. This study would be done at another time (but soon) off campus, at their offices. I scheduled this for August. We'll arrive at night and leave early the following morning.

Later today, the same neurologist returned with the EEG results, as well as their finding on the early morning event. Turns out, Henry indeed experienced a mild seizure in his sleep. His heart rate dipped, as well as his O2 sats, and within seconds, he recovered. I was reassured that this sort of seizure did not affect him in any way. The seizure itself was mild and short lived. He told me that it's the seizure that involves convulsing and lasts into the 30 min mark that are detrimental to the patent's well being. Putting it in perspective like that was comforting. For all we know, Henry has been having these little sleep seizures for a while and no one would ever see or notice them; they're unrecognizable to the human eye. Its not the same sort of episode that happened on Sunday; that was VERY noticeable.

All those booties gathering dust in hospitals?!? INSTANT PACIFIER/BIB!!!

This small seizure has prompted them to put him on seizure medication afterall. It is a very small dose (1 ml) but the docs believe it will help keep them at bay. If we see anything questionable while on the med, the dose may be increased or another med added. I've also been told that what he's been put on, Keppra, is very non-invasive and there are little to no side effects. It is also safe for the long term and safe with his heart condition. I asked it all. I was comfortable with the answers.

This seizure has also prompted an immediate MRI. Usually there is a waiting list for them, but since 1) we are here and 2) he's had a seizure and 3) the whole reason we were brought here, his need has been moved up the list. It will happen Thursday morning (or thereabouts) and I'm told it takes about 30-40 min. An MRI requires absolute stillness, so the cardiac anesthesiologist will be called to work with him. I'm almost sure it's going to be Dr. Dawn Sweeney, who's handled all of Hank's anesthesia up here, AND she's in total love with him. In fact, she peeked in twice while we've been here just to say hi and to see what's up. It's so nice... So nice.

Thursday is MRI day. After that, I'm going to hope and assume its Hang Out Day, completely uneventful. We'll probably be kept for observation after coming off anesthesia and probably will have to spend one more night. But if everything goes swimmingly without incident, I am told we can get on the road first thing Friday morning. I'm going to think in that direction. That's MY PLAN. I'll have to txt Hank and share that plan with HIM.

It's all good, Ma!