Wednesday, June 29, 2011

My Big Boy

I've been thinking about and observing Samson a decent amount lately, for some reason. I'm watching him grow into A Big Boy before my eyes. I'm listening to his words and phrases, the matching expressions on his face. The way he "quizzes" me on Star Wars trivia and then when i get it right, the patronizing, but approving eyebrow-wag while saying "Pretty good, Mom... I'm impressed." Pair such comments with the innocense and naivety to the knowledge that I've been on this planet for FORTY YEARS and definitely know that Princess Leia is Luke's sister, and the whole thing is priceless and heart-warming. Sam often puts down what he's doing to go out of his way to hug me, a lot of times out of the blue (read: he doesn't ALWAYS want something!). Samson's eyes get large and concerned when he sees me crying, and the way he gently caresses my face and says, "Don't cry Mom" seems almost surreal and way beyond his years...

On the other side of this coin is Samson, the biblical icon who flies into a rage when he's angry. [He does not, like the story, cause too much of a rukkus when I go to cut his hair - quite the opposite really.] Sam boldly talks back, only occasionally showing TRUE regret for his outbursts. But mostly, he seethes beneathe a deep furrowed brow, giving me a look quite resembling Jack Nicholson in The Shining. I think most of it is for dramatic effect, given the nature of Sam in the paragraph above, which actually makes the whole incident kind of comical and endearing (in retrospect, as these things go). Sam "tests the waters" like a true champ. When he's on his game, i could strangle him... with a SMILE!

"How DARE you talk to your mother like that?!"
"Samson, don't you push Beegsley like that! That's RUDE! He didn't do anything to you!"
"Sam, don't step on your brother's foot and then try to tell me it was HIS FAULT it was in your way! I'M NOT BUYING IT!!!"

Already, a mere 5 years have passed, and so many milestones and cute little moments have become a blur to me. My friend Natalie often reminds me of things Sam did, and i look at her, befuddled and embarassed, that i cannot remember such memorable events. I am thankful for this blog, for documenting, both in pictures and words, but i think, if i am going to use this as a reference tool, i need to write more anecdotes. More stories of things said and done, the things that seem oh-so-unforgettable at the time, but have a way of becoming dust-bunnies in my brain, forgotten under other thoughts and concerns.

Samson Vonnegut - i daydream all the time of the many steps you'll take to becoming a self-sufficient man. When you told me last night, very matter of fact, that you'll do me a 'favor' and put yourself to bed, i responded, very matter of fact, and casually with, "Okay Sam." You said, "Yeah... you get Tommy all settled in, and you can be all concerned with him, but i'll just sneak out and tuck myself in. It'll be cool." And then we proceded with story time, both boys, snuggled into Mommy, laughing and playing and sneaking hugs and kisses...

... and when it was TRULY time to get into bed, i checked and said, "So Sam... you still wanna put yourself to bed?"
"No. You can do it. I want you to put me to bed, Mom."
And i smiled... and said, "Sure, buddy. I'd love to."

I'll tuck Sam in for as long as he'd like. But i draw the line if his wife is lying next to him in bed. Then she can do it. ;-)

Tuesday, June 28, 2011

We Are Home

To start: Henry and I are home. :-)

To back-track: Thursday evening, a couple docs from Neurology returned to re-hook-up Henry for a second EEG study. Once again, the RoboHead look. Yuck. I hated it the first time, i was definitely not pumped for the second time. For two main reasons: 1) This study greatly limited my freedom of movement with Henry. If i thought he had too many wires before, this made it look like nothing, and 2) the first study left several sore spots and some scabbing, from reaction to the electro-gel used to conduct the study. Poor lil bugger's sensitive head did not like that. And now he had to go through it all again. But i understood why, and supported that reason...

And so fast-forward... it was now Saturday morning, and Henry had shown zero activity. Again. Murphy's Law, as they say.

Right off the bat, Sam does his "usual" and makes Hank SMILE!
It was also Saturday morning that Ron, the kids, Shirley and Dad were coming to visit. That was a nice time - albeit slightly stressful. The kids were great, actually, being themselves and quite behaved for the closed quarters. But Ron and I were a little off, and so it made for some slight tension. Shirley happily volunteered to stay in the room and rock Henry while the rest of us went out for the day. That, unfortunately, turned out to be more than she had bargained for. Because of Henry's new anti-seizure med, he was irritable and squirmy. Nana was not able to console him like she usually does, so the afternoon was spent just trying make everyone comfortable. He never did take a nap, like he so peacefully usually does.

On our end, Ron, Dad and I took Sam and Thom to a place called Adventure Landing, that my friend Julie recommended. It's basically a big play center for kids. There's a "Wow Factory!," with foam balls everywhere, and outside, were four Bounce Houses - those big inflatable 'jungle gyms.' Those were the two places we focused on. We had also purchased tokens to use in the arcade, but the arcade sucked. Mostly car-racing games that Sam's short legs couldn't reach, or games that won you MORE TOKENS, which i certainly didn't want. Even the skee ball was a little run down. But boy!... Sam and Thom wore themselves completely out between the Wow Factory! and the bounce houses. It was sheer joy watching them smile and enjoy themselves. At one point, Thom was playing a game outside - bounce in a house, come to Mommy for a hug... bounce in another house, come to Mommy for another hug. I could have played that lil game for an eternity.

We returned to the hospital to hear of Shirley's day (ugh!) and as it was late, decided to get everyone together and head out. I held on to Sam for a ridiculous long time and started to cry, to which he petted my head and then gently stroked my cheek: "Don't cry Mommy." Eek!!! I just missed everyone so much. Soon they headed out and I was left once again, just Hank and me. He didn't fall asleep until 8:45 (for the first time, really, all day!). I went back to the Ronald McDonald House and conked. All week i had been frequently awoken in the middle of the night with horrible leg cramps. That night was no exception. And i was eating my bananas! Man, they hurt.

Sunday morning, i was greeted with a fussy Hank. No smile hello, just whining and crying from the git-go. I held him, rocked him, sang him the Alphabet Song... nothing worked. In between these moments, neurology visited to say they would remove the EEG monitor later that day. With no activity for close to 72 hrs, there was no sense in keeping the wires on his sweaty little head. I couldn't agree more. Closer to wireless FREEDOM! The neurologist on call for the weekend also agreed that with no seizure activity or blue spells in all this time, there was really no reason to stay, and so he was going to recommend discharge. Again - i was in agreement. The floor physician also agreed, and so discharge was in the works; she's also the one that told me that his GI study results were negative of anything unusual happening with this nissen, the surgery to control the reflux. By 4:30 pm, i was signing the papers and we were ON OUR WAY!

I checked out of the RMH, gassed the car and hit the road. I wanted to surprise Ron, who had to work, by stopping by the store with Hank, and surprise him I did!!! It was really nice to be back in town. Both boys greeted me with HUGE hellos and yelling "MOMMY!" when i got outta the car. Ahh... HOME!

So since being home, over 24 hrs now, there has been nothing. Nothing, that is, except for Henry's very noticeable altered demeanor. I originally thought it was teething - he's been highly irritable, ansy, arching and wiggly, and just an overall ICK. But then i recalled reading all of these behaviors are side effects of the Keppra, the new med in his life. I put a call into neurology and waited all day for a return call. In the meantime, Henry just cried and whined and was particularly clingy all day. I was unable to easily leave him, put him down, etc. Dr. Augustine returned my call in the evening to say that there is an adjustment period of about 2 weeks. If Henry is not better at the end of next week - more himself - we will definitely look into changing to another med. But i'm hopeful that he needs that time to adjust; Keppra is known for being relatively 'kind' to one's system and other organs, and existing heart condition, such as in Hank's case. I look forward to the gradual return of Sweet Henry Huggins. I miss him immensely!

Until next time... here's to blue-free Love and Laughter...

Saturday, June 25, 2011

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!

Wednesday, June 22, 2011

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!

Monday, June 20, 2011

Day 1 at Strong in Pics

The rest of the day proved rather uneventful, which was welcome. I did not receive word from the first night's CAT scans, but Henry went through two applications of tiny little colored wires attached to his head. They want to see what his brain is doing when (and if, but hopefully not) he has another apneatic episode. I'm not feeling it will happen again since he's gone 24 hrs without incident. Some developments: 1) He got put back on regular feeds! Yay! He was hungry! and 2) He was taken off the nasal canula (O2 into his nose). Double yay. I also managed to get them to detach him from the nutritional IV that he was using last night. One less !@#$ TUBE/WIRE! Tomorrow i'm going to see if he can come off the BP cuff unless and until a reading is needed.

Today, a friend contacted me with a 'lead' in what might have caused Henry's apneatic episodes. Her name is Kristine and her son Jeremy had cleft lip/palate repair (years ago, but the info is still current), among many other complicated surgeries; I have always been in awe of their journey and resounding strength. 3 weeks after his palate repair, he too had breathing difficulties, although much more severe, and requiring much greater measures in correction (placement of a tracheostomy). The repair of his palate turned out to be the culprit. I've been doing a little research, through her documenting Jeremy's story, as well as further info through the internet, and I've requested a consult with Henry's attending physician. I was hoping for it tonight, but they were busy with a transport and a transplant! Dr. Finnerty also proposed that the palate repair might have something to do with this change. Afterall, the timing is right (although not immediate (6 wks)), as well as common sense: a great big airway has been closed off. Henry's physical anatomy might not be easily adapting.

For the record, the above are all just my THEORIES and viewpoints and thoughts. I feel strongly in sharing them with the attending tomorrow and I hope to do so in a convincing, compassionate, logical and thoughtful way. It's a route that i have not heard, so far, is being investigated, and from what little I've read today, seems QUITE correlated. We shall see. Updates to come...

One EEG study was apparently not enough. Now, for the 24 hr "heavy duty" one...

"Dude... are you kidding me?"

Henry, sportin' the Tube Head look.

G'night, Sweet Henry Huggins. Sleep well, lovey.

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.

Sunday, June 12, 2011

The 28th Annual Pop Can Fun Run 2011

"Sam, smile nice, please!".............. uh... whatever. ;-)

The first PCFR that Sam ran was back in 2009. His brother Thomas was younger than Henry is now, chillin' from the stroller. This year, however, two of the three Telford boys adorned the purple 2011 teeshirt and ran their BEST!

The Run is open to children ages 2-10. Most of the 2 and 3 yr olds are joined by a mom or dad to root them toward the finish. I did it with Sam two years ago and this year, i did it with Thom. Thanks to my friend Bethany (and Sam's buddy Taigan's mom) for taking the shot of me running with Thom. It was nice to have company; between the two of us, we had four boys running, all in different age groups. We both also have three boys. :-) The sun was shining and there was an excellent turn-out. See ya next year!

Taigan, Samson and Thomas

Run, Tommy Boy!........... Bethany and Evan........... Thom, so proud n smiley!

Watching, Listening, Waiting... and, what's that bug doing?

Brendan, smiley............... Sam, gearin' up................ Happy Mom-n-Thom

Mmmmm.... Ice Cones (Thom called 'em that, and i like it!)

Tuesday, June 07, 2011

Lil Wigglin' Piggies

Handsome Hank

Sam's Dream Notebook #1

I title this blog entry as such because i just have a feeling that Sam is going to be telling me of many nighttime dreams (and nightmares!) he has. The following two dreams were told during bathtime last night.

* * *

Sam and Thom were yucking it up in the tub last night and i say, "Hey Sam... do you remember waking up in the middle of the night and coming half way down the stairs and having an accident?" He gives me the most totally perplexed look, which answered my question right there. Poor bugger had woken up around 12 or so, running out of his room crying, and i met him halfway on the stairs to a wet puddle. I took him to the bathroom, cleaned him up, got new dry PJs on and tucked him in with a big smile. His pillow was soaked (but not the bed!) and i thought, "whoa... he was dreamin and sweatin HARD!"

Dream #1 "The War"

Sam says, "Did i REALLY do that Mom? Did i really pee on the stairs?" I played it off very casual and cool, saying yes, he did, it was okay, he must have been half asleep. He says, "Well... that explains my bad mood this morning. I just hadn't gotten a good night's sleep!" I chuckled and agreed.

Then he says, "I think i know what got me up like that. I had a really bad dream."
Me: "Oh?... Do you want to talk about it?"
Sam, giving me a very concerned and serious look, "I better not."
"Okay. S'up to you sweetie."
Long pause.......
Sam: "Do you really wanna hear it?"
Me: "Completely up to you. You share what you'd like."
More frowning concerned expressions... VERY adult looking... "Okay... I'll tell you."
Another LONG PAUSE... quiet starings at me... I was thinking "Man, what is this kid about to SAY to me?!?"

Sam, deep breath, then, "Remember back in the 80s and 90s there were a lot of wars?"

At this point, i get this huge chill up my back. Ron laughs at me when i say this sort of thing, but i've read (and personally heard stories!) of children around the age of 4-6 telling these crazy factual observances, be them dreams or things they've SEEN... stuff no 'normal' 4-6 yr old would have seen, let alone KNOWN about.

So the first thing that came to mind was Desert Storm. I mean, we're talking the span of 0.2 milliseconds or something. VERY fast. A mind check on the time frame. Yeah... early 90s....

But then Sam says, "... and the Red Coats were fighting the Blue Coats?"

Now my mind has reset. And i'm doubly blown away. IS THIS KID TALKING ABOUT THE CIVIL WAR?! Now mind you, I am embarassingly horrible at history. I really and truly barely know what i need to know to get by without getting my IQ tested. It's just aweful. That is why, now, i am quite taken with any sort of history documentary i can get my hands on. I'm making up for lost time. For instance, i had to Google that, in fact, the Red Coats and Blue Coats are referring to the American Revolution, not the Civil War. I'm just gonna leave it at that before i exhibit my further lack of knowledge (siiighh...)

Me: "... oh, you mean the 1880's and 1890s, which was 100 yrs ago? Yes... go on."
Sam, blinking slow and swallowing, in a very professor-ly manner: "Yes... a long time ago."
"Well... i dreamt that I was fighting in that war. And Daddy was fighting next to me."
[Long pause.... lots of swallowing and blinking here...]
"And they shot Daddy. He died. Right next to me."
"Oh Sam... that must've been very scary."
"Yes... very. And it made me very sad. Daddy DIED."
"Aw Buddy... that WAS crazy. But luckily it was a dream."
And THEN, finally... the little 5 yr old boy RE-EMERGED and he squirted his brother in the face, screaming ensued... we had been ejected from that crazy wormhole unscathed. ;-)

Dream #2 "The Cats."

About 3 minutes passed and Sam said, "Mom... i had another scary dream later that night."
[OMG, here we go...]
"Okay... wanna tell me that one?"
Sam, more swallowing, blinking, concerned looks all over again: "I probably shouldn't."
[Now it's just a game (?!?!)]
I stayed silent, just looking at him, pouring water over Tommy.
Sam: "Okay. I'll tell you. You know about those great big... mmm... um... MOUNTAIN cats?"
"Mountain cats? Like lynx and leopards?"
"Yeah... and sometimes lions and tigers... those BIG CATS in the wild?"
"Well... i dreamt that you, me, Tommy, Daddy and Henry were in the jungle hiking around and all these mountain cats jumped from the trees and killed us and ATE US!"
"WOW, Sam... that's CRAZY!"
"Yeah... but Mom.... they ATE US UP!"
"Well, did they eat us AFTER they killed us at least?"
"Yeah. We were already dead."
"Well THAT'S GOOD. Cuz it'da really hurt the other way around. Although i guess the killing part probably hurt too."

... Back to squirting and playing.


Sweaty Sam and His Crazy Dreamin'!