Lil Boy Blue

I am sitting in front of a foreign laptop. It is located in a small room, in a section of Strong Memorial Hospital in Rochester, NY, that houses 7 rooms of a satellite Ronald McDonald House. I am here because Mr. Henry Telford has decided to stir things up a bit.

I think he's in store for his first time-out with this one.

Sunday morning, Father's Day, Ron and i awoke to Sam and Thom running into our bedroom with smiles, giggles, and fighting (the norm, no big whoop). Sam handed Ron the most awesome little laminated poem with his footprints at the bottom, a project he had made at school. It was around 8 am at this point.

As we started getting things going, i thought to myself, "Henry is sleepin' in today. He hasn't made a peep." Normally we wake to Henry cooing and "yelling" from his crib, and if he senses us leaving the room without getting him, he'll start crying. As i approached his crib, ready to gently wake him, i noticed him staring ahead, motionless. "Hey buddy... whatcha doin in there?" I picked him up and he was just "there." No reaction to me, to real interaction whatsoever. I laid him on the bed as i got dressed and Sam came into the room. I said, "Sammy - go over and say good morning to your brother."

Sam would be the Big Test. All Sam normally has to do is bring his face into Hank's vacinity and Henry will begin laughing hysterically. It's the craziest, most heart-warming thing you'll see. But today - Henry barely looked in Sam's direction. And when he did, the look was blank. My Spidey Senses were in full force at this point, a mere 10 minutes into my day.

We all got ready and went out to breakfast before Fellowship at 10:30. As we were eating, i noticed a couple coos from Henry and SOME interaction. I even "made" him smile, by tickling him, which helped me feel a little better.

We arrived at church to a full house. It was so bright, and sunny, and all the familiar faces really made me happy. Several folks stood up to share Joys and Concerns (mostly Joys, which is always nice) and I held Henry near the back, by the open window. I noticed he had gone into a full body sweat, little salty droplets coating his forehead and neck. He was asleep, as he had mostly been throughout the morning. If he was not sleeping, he was incredibly lethargic and just 'blah.'

At one point, after absentmindedly rocking him for a while, i looked down at him. He was staring up at me, but completely void of life. His eyes were moving, but just barely, and i think he might have sort of blinked. I said, "Henry?... Honey?...." I looked at his overall color and noticed he was quite pale, which then prompted me to look at his fingernails (both hands and feet). Children with heart defects oftentimes have a blue-ish hue to them. I am so used to Henry's coloring that i don't see it like someone who is meeting him for the first time.

But on this morning, when i looked down, and pulled up his fingers, i just about choked. They were a dark, purply blue. Both his fingers and toes. Pair that with the completely blank, see-through stare he was giving me and i looked over at Ron and i said, "Look at his hands. We gotta go." Even Ron glanced up at me, quite scared.

I scooched by folks and headed to the van. I tried to be quiet but i guess that's a little impossible, because next thing i knew, several members had followed us out, and Ron was trying to quickly hash out a game plan as to whether he would join me on the ride to the hospital and what to do with Sam/Thom. Needless to say, those weren't gigantic worries, as we were surrounded by loving friends, all diving to help.

In those few seconds of discussion, i looked in on Henry and was flooded with sheer terror - he looked like death. Literally. I said, "RON, WE GOTTA GO!!" And so go we did.

I didn't drive 100, but definitely 20 mph over the limit. Within minutes of driving, Ron said, "Babe... his color is back. He's pink again." But he had passed out into a sleep. Soon we were in the ER and they were taking his Pulse Ox. We discovered it was at about 70 and he was admitted to one of the ER rooms.

Henry, in my arms, at Arnot, sleepy and needing some O2.

Over the course of 6 hours there, Henry and i sitting in the bed together, he exhibited these "blue episodes" two more times. One was witnessed by one nurse, and the other was witnessed by just about everyone.

What happens is this: He gets very calm and then stares, usually into my eyes. A completely untrained professional, even someone NOT Mommy, could watch the color literally drain from his body and his lips, fingers and toes, turning completely blue. For the next 20-30 seconds, there is no life except for a very scary, very lifeless stare, almost a slow-motion pleading for help.

In all the time I've 'known' Henry, since the minute he was lifted from my belly, through the cautious presentation of his heart defect, his chromosome disorder, the heart surgery, the facial surgeries, the reflux episodes, etcetera, etcetera... I can tell you that NEVER have i been more affected or truly scared that i was about to lose my little boy then on Sunday. Every time it happened, the overwhelming feeling of total and utter helplessness was breath-taking. Shaking him, yelling at him, pinching him... and nothing. I explained the above notion to everyone around us, after the episode concluded and he got his pink color back and drifted into a drained sleep, and proceeded to lose it.

Just. Ugh.

The decision was made, upon recommendation and mutual agreements, to bring Henry to Strong Memorial Hospital here in Rochester. They are more equipped for care and observation than Arnot, more comfortable seeing special "scary" children (at least to Arnot) like Henry, and tests could be performed. This decision was made around 4, and by 6-ish, Strong had arrived for transport. During preparation and strapping him up, he had another episode. It was TIME TO GO!

They took off, and because i was without a car, i called Dad to please come pick me up and drive me home. It was my plan to pack, get in a few Sam and Thom and Daddy huggins and then head up right away, because when they left, Henry's condition was still incredibly unstable. I did not want to arrive to a situation more grave than when i left him, if i could help it.

I arrived at Strong by 10 or so. Henry was sleeping and i was told that he had several episodes in transit and one more in the bed. Within an hour, a cardiac ultrasound tech was at bedside and she stayed looking at Henry's heart anatomy for over 30 minutes. Her conclusion, which has since been somewhat verified, is that his heart, for HENRY'S HEART, looks fine. Same ol same ol. The PA band is in the same position with no further tightening.

The nurse got me the last room in the satellite Ronald McDonald House facilities located on the floor above Henry. There are 7 rooms. It's GREAT! I was able to take a much-needed shower (an overabundance of stressful sweat during the day makes for a stinky Mama!) and being rather restless, i returned to Henry's floor around 11pm.

Henry being prepped for his EEG this morning. Actually, he didn't mind too much!

"How long do I have to lay like this, Mom? 30 Minutes?!.... uh... okay."

When the elevator doors opened, he was there in his bed in front of me! He was en route for a CAT scan. That was performed without incident and as I type this, am awaiting definitive results from that. The preliminary results is that there is (also) no noteworthy activity with his brain. No sign of hemorrhage, or tumors, etc. That's nice to hear.

As of right now, and when i arrived at Hank's bedside around 9am, HE WAS BACK TO HIMSELF!!!! I went up to his bed and he turned his head to greet me! This is a 180 turnaround from yesterday, as he slept, rolled listlessly or had these blue episodes (choose one of the three!) all day. Today, within seconds, i could tell he was more himself. Looking AT me, not THROUGH me. Grabbing for me. Cooing and babbling. Kicking and rolling. Just. Hank. AHHHHHHHHhhhhh... precisely the mental relief i was seeking. I know it doesn't PROVE anything, but it certainly doesn't hurt to see your child back to himself for the most part.

Snuggle time with Mommy. It's all good.

Today will be more tests. More theories. More conclusions and explanations. I am hoping to hear less and less from neurology. I would "look forward" to hearing that he has a cold or something treatable with antibiotics. I do not, as my friend Natalie mentioned through her own personal understanding, want to learn or hear about anything NEW. And certainly nothing new and SCARY.

As we lived, a whole year ago back in Philly, which seems so long ago: One Day at a Time.