Day 5 at Strong and Stunts

That's what I'm calling what Henry does. He's pulling his STUNTS...

This morning, I arrived at his bedside around 8. He was just waking up. Cooing, eating his socked hand, and what not. Henry Stuff. I changed him and then picked him up and brought him to the rocker next to his bed. He snuggled in, looked at me with those big brown eyes, and we started watching The Today Show together. Within 10 min or so he was out again. This isn't like Henry, normally. Once he's up, he's up, usually til past noon. But this morning, he seemed sleepy, so i wrapped him up and rocked... hangin out, no big whoop.

A little before 10 he woke up and i sat him up to look around, etc. He's been chewing on that little booty i gave him like its his job lately, so all of a sudden I had a NOVEL idea: Why don't you check with your finger what kind of teeth are comin' in, Chris! I washed my hands and took my index finger and gently started rubbing and WOW!!! There were at least FOUR teeth that i could feel, all poking out and totally IN, not just starting to break the skin. I couldn't believe it!!! The two of us had a little moment together, him smiling and me going on and on like he just won the Nobel Peace Prize (hehe)...

(Here is a good spot to say, later in the day, i discovered that i wasn't feeling teeth at all. I was actually feeling bone inside his mouth that is still exposed from his palate repair. Due to the nature of the repair, some bone has been exposed (totally normal) and well... yeah... bone feels like TEETH. Sharp bone, at that. Just like little baby teeth. Oh well...)

Within minutes of us sharing out little moment, I noticed Henry staring blankly ahead. He started blinking slowly, as though he was about to fall asleep again. But instead, in a matter of SECONDS, his eyes rolled around, he went totally floppy, and worst of all, the color drained away from him. He was ashen grey/blue and lifeless.

I yelled his name a few times, bouncing him quite dramatically on my knee. I pushed the nurse call button and in 2.2 seconds when i realized that wasn't fast enough, i just yelled out "HELLO?!?!" and immediately a nurse walking by came in. By this point, *I* was shaking quite hard, while bringing him to the bed. Still no response, still quite blue. This nurse pulled out the O2, set it on the highest setting, and blew it right in his face. That seemed to perk him up... he started moving his head around, and the pink hue I love to see literally rolled BACK up into him. His nailbeds were no longer blue, but pink. It's the craziest damn thing i've ever seen.

Henry rolled his head from side to side, to try and get away from the oxygen blowing on him and in a matter of seconds, almost as quickly as he slipped away, he was back, and back to do his Henry Thing. Chewing his hand, kicking his feet, cooing... just CRAZY. Not 100%, on a great day, but pretty close. He's not been 100% since he's been here, but that's all very understandable.

Just 30 minutes before all this, around 9:30, the resident neurologist, Dr. John Smith (no kidding!), who looks incredibly young and wears a bow-tie, came by and said there were no findings on the MRI and given that he's gone over 24 with no activity (at the time!), we were going to go ahead with the GI study later that day, and then most likely send us home on the anti-seizure med he was already on. Sounded good to me.

10 minutes after his chat, all the docs came into our room for Rounds. We all openly discussed Henry's non-activity in the past 24 hours, MRI looked good, and the plan was to go home.

As he was coming out of his STUNT, and i was still calming my adrenaline and wiping my face, the crew came BACK to our room to discuss what happened. I explained, the nurse there confirmed, and everyone looked at everyone else. The attending physician, Dr. Blatt, said, "Well, as you can imagine, the plan to send you home has kind of changed." Nervous laughter. But needed. The GI study was going to happen as planned (around 2) and they were sure they wanted to hook him BACK up to the EEG monitor for a minimum of 48 hrs again. They desperately want to catch one of these episodes on tape. It's not happened yet. He's very good at BEING GOOD while looking like a robot. The minute the wires come off, he decides to turn blue again. It's incredibly frustrating.

The rest of Henry's and my morning was uneventful. We watched t.v., drank seltzer and clapped. Sure enough around 2:30, a gal came up from Interventional Radiology to get Henry for his GI study. During this test, they were going to shoot some dye into his g-tube (aka, into his belly) and take a look and see that his nissen was still functioning properly. The nissen, as a reminder, is the surgery he had (wrapping part of his esophagus around the top of his stomach) to prevent his horrible reflux issues. If the nissen has slipped, or herniated, or SOMETHING, then he could be silently refluxing, which can wreak all sorts of havoc on him.

While Henry was in his study, i took that opportunity to run to Wegmans to pick up some things to keep at the Ronald McDonald House for eats. Mostly for bfasts and lunches, which can really add up if i buy them at the hospital all the time. I looked up the nearest Wegmans on my iPod and set off.

Turns out, the Wegmans my "Around Me" app sent me to was a distribution center of some sort. I think i might have been at the HUB of where all those trucks you see on the road come from. This place was HUGE and very industrial looking. Clearly not where i'm going to pick up some bread and chips.

Between calling my friend Pam at home, and pulling into a McDs parking lot and pulling up their Wi-Fi signal, i got directions to the Pittsford store. I'm not entirely sure why i didn't just pick to go there in the first place. Well, I know why: my app said the other place was closer. Bygones, I got directions for the Pittsford store and set off. Super easy. About 10 min from where i was.

The Pittsford store (in Pittsford, NY) is the "Mother" store. If something new is being tested, it'll be tested here, This store is always hoppin, always gorgeous, just really cool. I think i could show their sign shop a thing or two (ha!), but that's neither here nor there.

I grabbed a small cart and the first thing i noticed was that this store is set up "backwards" than what I'm used to. Most stores, as well as ours in Corning, work counterclockwise. You go to the right when you walk in, past cheese, bakery, produce, etc. This store, you walk to the LEFT and work your way clockwise. I know this sounds stupid, but it was totally disorienting.

I was walking somewhat aimlessly, in their Prepared Foods section, not entirely sure what i wanted to get, and also thinking about Henry, and when i looked up, there was Danny Wegman and his daughter Colleen, the CEO and President, respectively. They were talking with a couple people, and i now noticed some music playing outside the doors there. I also remembered later that this week is LPGA week up here, sponsored by Wegmans. It's big.

As i was looking at them, it crossed my mind to go over and introduce myself. And without any hesitation, that is what i decided to do.

"Hello... Danny... Hi... Colleen... I wanted to introduce myself to you guys. My name is Chris and i work in the Sign Shop at the Corning Store."

From Both: "Well HELLO! That's awesome... it's so nice to meet you!"

*Smiling from Everyone*

"It's great to meet you, too. Actually, I wanted to not only say hi, but specifically, i wanted to tell you... Well, the reason I'm actually up here is because my son Henry is at Strong Memorial Hospital..." (Concerned looks from both... and it's at this point that i start to lose it a little. But i don't want to freak them out, so i get myself together...)

"... and, we're not entirely sure what's going on with him, but what i wanted to say is that my husband and i are so very thankful to be working for this company because your generosity and care, especially at home in Corning, at our little store, the gang there... Everyone has been so amazing. Since Henry was born, and now, we're not sure how long I'll be out, and I'm always told not to worry."

(Colleen is nodding through all of this and Danny is quite focused and listening...)

"So, when i looked over and saw you guys, i thought, i need to tell them how much it means to us. So thank you."

Colleen: "Oh Chris... I'm so sorry that you are having to go through this. Of course you're welcome."

Danny: "Tell me Chris... tell me what exactly is going on with your Henry. I'd like to know."

So i proceed to tell him, and both are gasping and consoling... And at the end, Danny wishes me the best and as i go to shake Colleen's hand, she pulls me in for a great big hug. Danny did the same. I was quite humbled by their personal attention. It only solidified how i feel about working for this company, but more importantly, how truly awesome they are in caring for their employees. It's not just a show or 'just words.' It was incredibly nice, and i walked away feeling VERY good that i finally got to tell the Two Main People of the company i work for, how exactly i feel, and was able to say Thank You directly to them. Felt good.

And so i managed to buy $50 worth of stuff (Egads!) to store in the fridge and pantry at RMH. I bought these AWESOME Newman's Own High Protein pretzels in the Nature's Market section... they are literally the best tasting pretzel on the PLANET (if you are thinking "what!? Pretzels are BLAH," then you haven't had these, baby!). Also got me some hummus, some CoCoPops, some red/white/blue bread (YUM!), almond stuffed olives, deli meats and cheeses, mini in-store baked choc chip cookies...

Okay, I'll stop.

The rest of our day together was uneventful. Neurology did indeed hook him BACK up to the EEG monitor with all the lil wires. Ugh. But whatever it takes. I hope they catch something so they can see/read it and figure it out! Otherwise, we're no closer than a few days ago!

Tomorrow (well, TODAY in five minutes!), Ron and the boys (and Shirley (and Dad?)) are coming up for a visit. We are going to take the boys to this place called Adventure Landing that my friend Julie says they'll love. I was checking it out online - looks FUN! It will be so nice to get and give hugs!!!! I miss all my boys so much. Pics on our day together, forthcoming for sure!