My Funny Valentine

They say that the third time’s a charm, but I don’t know if that phrase is relevant to surgery. Our experience started with a “thud” instead of a “bang.”

He's way too excited considering how early it is in the morning... (note the coaster thief in action)

He’s way too excited considering how early it is in the morning… (note the coaster thief in action)

Thankfully, the surgical team reassigned Alexander’s surgery for early morning instead of his original afternoon slot.  You can only imagine how difficult it would be to explain to a two year old why they can’t eat anything for half a day. Even though Alexander was up much earlier than normal and still in his dinosaur jammies, he made a brief attempt of his Plea For Yogurt(tm) until I was able to distract him and get him bundled and into the car.

Alexander’s surgery was once again at Comer, so we were well-prepared to make the brief hike from the World’s Smallest Waiting Room (that doesn’t allow food) to the incredibly spacious and beautiful Sky Lobby across the street. Because of the high incidence of influenza, the waiting room was stripped clean of toys; I really felt for the families we saw later in the day with children camped out for hours in this small, cramped space.  With Mickey Mouse Clubhouse on full-blast, Alexander proceeded to expend his toddler-ific morning energy happily shrieking and running around. We took turns following closely behind our little man as he wobbled around the waiting room.  Brian and I were both all-smiles, and I thought to myself, “We’ve got this one.”  For any of you parents out there, you know that is the exact thing to think when you want all heck to break loose.

As if Alexander could read our thoughts, he toddled over to a kid’s chair, sat in it, and faster than you can say “thud,” little man did a face plant into the carpet. Almost like a record scratch, the entire waiting room’s collective head turned to our little corner and watched as we scraped our wailing little son off the floor.  Timing couldn’t be any more perfect, as the pre-op nurse called our names to come back. I swear I could almost hear her say “Parents of the Year Kelly family?” as we tried to console our now hysterical son and cart him into the surgical area. So just like that, we went from a smiley, happy boy to a crying toddler with a nasty, bleeding rug burn on his forehead and a slightly cut lip.

For as traumatizing as his little fall was, that was just about it for the morning’s negative surprises. After we cleaned Alexander’s scrapes up and settled him down, within minutes the anesthesia team and the remainder of the Surgical Medical Personnel Parade took place, and our little guy once again unwillingly donned his gown. I think we gained a little “hospital cred” when I specifically requested the koalas in spaceships gown– they originally pulled out something else, and I knew it would be too big.  Handing Alexander over to the team at The Red Line didn’t get any easier. As you might guess, the hand-off has to be fast, as the anesthesia team tries to minimize the trauma/fear of separation. This was the first (and hopefully last) time that I quickly handed Alexander over to the doctor and walked away; it really is a painful feeling to hear your child wailing and screaming “Lala!” as you make a quick exit.

We immediately went to the Sky Lobby across the street, had breakfast, and settled in for a long wait. When we asked our surgeon about approximate surgical time, he indicated that this was going to be the long one, and that we should assume at least three hours, but with set-up, anesthesia, and closing, that it would might be even longer. With that in mind, you can understand how shocked we were to get a call maybe an hour and a half into our wait with news from the OR that they were wrapping up.

We understandably were a little panicked during our walk back to the Comer waiting room, but our surgeon’s smile when he came through the  door was immediate relief. After the obligatory handshake, he gave us the incredible news that “everything just sorta flowed and came together” making the surgery unbelievably quick.  Within a few minutes, we were whisked back into post-surgical recovery, and we got to see our sleepy little man. Alexander was a little whiny, but we could immediately tell he handled the surgery well. He wanted to sit up, much to the chagrin of the PACU (post-anesthesia care unit), and he was signing wildly (with one hand slightly immobilized with an IV board) for “more yogurt, please!”

After several hours of recovery, Food Network, and waiting for an open room (thanks to a completely influenza-booked hospital), we were transferred to a room.  Alexander renewed his request for yogurt, which was sadly not possible due to his dietary orders, and he settled into a Mickey Mouse Clubhouse-induced stupor. Brian and I were able to order up dinner trays for ourselves along with Alexander; although I wouldn’t call the hospital food gourmet by any standard, dinner that night tasted incredible– mostly a result of being starving and somewhat exhausted. Brian eventually called it a night and headed home, and the kidlet and I eased into some more Food Network and a rather uncomfortable futon. (Apparently, Alexander either really likes Robert Irvine or highly dislikes HGTV. Anytime I tried switching the tv to something other than Restaurant Impossible, it was met with incredibly negative feedback. Go figure!)

Alexander continues to amaze me with just how adaptable he is, given a few things he’s unwilling to bend on. After he scarfed down his entire dinner (clear liquids, but still…), we began his normal evening routine before bed.  We said night prayers, I cleaned him up a little, turned down the lights, and handed him Kokkonisto.  Much to my surprise, Alexander sat straight up in bed and began howling, even after I turned out the lights and reduced the television volume. It wasn’t until I started making up my bed that I realized what he wanted. Alexander normally sleeps near, but not directly under some small blankets. Because he was incredibly warm, we didn’t tuck him under any blankets when he was placed in his hospital crib. I immediately pulled the pillowcase off my hospital parent pillow, and lightly placed it over his legs. He squealed, pulled it up under his chin, and made the sign for “blanket.” Immediately, he laid back clutching Kokko, turned to his side, and was snoring in minutes.

Though the night was filled with occasional cries of pain, my leaping up to find a nurse for various issues, and seemingly endless little requests for water and juice, Alexander woke up requesting (say it with me!) “more yogurt, please.”  The residents did their rounds, and our surgical team stopped by to watch Alexander demonstrate his animal noise book. (They all seemed incredibly surprised to see him sitting up, smiling, and playing away the day after his surgery.)  I visited the family lounge while he was still a little groggy in order to find some caffeine, and I ran into several other moms seeking coffee.  Later on in the morning, I walked down the hallway and heard the painful howls of their kids– and it really hit my heart. It’s hard to realize how incredibly great you have it when you’re fully consumed with the care of your child, but hearing and seeing children undergoing a similar surgery fairing far worse really puts things in perspective.

Though Alexander was more than ready to pack up his sheep and head home, we utilized an expert phlebotomist on staff to fill a few remaining adoption clinic blood tests in the morning. By the time Brian returned in late morning, the surgery team and nurses felt that Alexander was ready for discharge. We were all fairly surprised because everyone warned us to prepare for a several-day stay. Most cleft patients, we were told, suffer from extreme fever and usually refuse to eat for a day or so. Considering Alexander was begging for his favorite dairy snack minutes out of anesthesia, he was quite the unusual patient.

Incredibly, we were discharged and on our way by early afternoon. Alexander left with a ton of toy swag this time (thank you Child Life department!), and the nurses thanked us for being “reasonable parents.”  Though I’m still not quite sure what that means, I think the fact that we didn’t yell at anyone and kept our child hydrated helped out quite a bit. Though I can’t blame them given the circumstances, I saw several other parents of patients either melting down or just completely hands-off with respect to their kid’s care.

Checking out a new book from Comer upon return home from the hospital

Checking out a new book from Comer upon return home from the hospital

After an uneventful ride home, Alexander ran around the livingroom in his “new” cuffs. We knew he’d have an early night– by dinnertime, he just collapsed on the floor like a limp noodle. I ran to Target to get some OTC meds for Alexander and received a text that the kid was snoring on the floor. A mere two hours later, I was the same way.

Though we still have our post-operative appointment in two weeks, it’s hard to believe that surgery is at an end for the foreseeable future. Alexander enjoyed his first Valentine’s Day at home instead of in the hospital, and we all breathed a sigh of relief to sleep in our own beds.  We can’t thank you all enough for your support, love, and well-wishes for our little guy. He’s been an incredible trooper through it all, but your support has really helped carry us.






Cabin Fever

As the snow continues to pile up in our driveway and our village’s salt supply continues to dwindle, our family is buckling down for perhaps the biggest squall this year. No, I’m not talking about the next phase of the polar vortex– I’m referring to Alexander’s final round of surgery coming up this Wednesday.

Alexander embarks on a one-player adaptation of the game Hot Lava.

Alexander embarks on a one-player adaptation of the game Hot Lava.

Though we’re not panicked about the surgery itself, we have been warned that recovery this time is going to be much more involved (especially because he’s no longer an immobile little baby). The surgical team will be doing a complete repair of his hard palate, which means he’ll be able to eat solid foods and begin to articulate words after he heals! For the first surgery, his limited mobility really helped logistically, so he pretty much stayed put in his hospital crib. By the second surgery in October, he could pull to a stand (look at that parental lingo!), but he wasn’t walking yet. Now though, we’re dealing with a full-fledged wobbly toddler who wants nothing less than to be running around allthetime.  Another slight “concern” is that our clever little man is constantly devising strategies to literally climb to new heights. Santa’s gift to him of cardboard blocks are an endless source of gaining a few inches when trying to reach things.  He’s a virtual Houdini when it comes to prying off his arm cuffs even with an IV, so we and the nursing staff are going to have our hands full with Alexander.

Because the surgery will be fairly invasive, we’ll be camped out with Alexander for a few days at Comer; if all goes well, we’re hoping he can be released on Friday.  We are SO grateful that this will be the only surgery for the year (crossing fingers), but we’re dreading the exhausting week ahead.  I can’t quite explain how emotionally taxing it is waiting for your child to gently (sometimes not to gently) wake from anesthesia after surgery in post-op, but I think after that hurdle, it’ll all be downhill.  By now, we’ve figured out to silence most of the drip and sensor alarms when they go off at 3 am and what not to order from the hospital menu for breakfast, not to mention why the discount parking pass isn’t as cost effective as validation for more than a 24-hr stay. With that said, I’ll be more than happy to put these tidbits into my periphery of acquired knowledge and move to bigger and better things.  Similarly, Alexander has learned such important life lessons as always smiling when the residents are on rounds in your room, taking advantage of those days when pudding and applesauce are on the menu for breakfast, and never letting up the tears until someone produces a Thomas the Train sticker for you. People in white coats are always good for a few stickers.

After receiving an incredibly thoughtful little care package for Alexander from some dear friends, I felt inspired to put together a bag full of activities to keep our frustrated little boy entertained and distracted. Considering that he’ll have his arm cuffs back on and will have an IV, he’ll be stuck in his hospital crib for the most part.  So far, I have some bubbles, play dough (though that was met with trepidation today), and a few chunky crayons. I would love suggestions from any of you out there for activities/games/songs to help keep an almost 2-year old entertained.  The hospital usually offers toys as well, along with therapy animals– one of these days, maybe they’ll have therapy cats!

To add one more layer of fun to all of this upcoming week’s events, Alexander is getting over a nasty head cold. Of course, he was as healthy as a horse until his 6-month adoption clinic checkup on Friday. He was only running a low-grade fever, but given the open palate, our household’s main activity this weekend is following him around with soft nasal wipes and saline spray. The checkup itself went well, and the clinic was kind enough to schedule all of Alexander’s labwork to be done while in surgery.  The little man is finally on the growth charts, and he literally ran out of the examining room squealing with a big smile much to the joy of the adoption team. It was one of those life moments I’ll remember, as a few medical staff and physicians poked their heads out while Alexander toddled down the hallway in his little snowflake sweater. There was a lot of clapping, cheering, and cooing Friday morning in the hallway– it was a perfect way to wrap up our interaction with the adoption clinic.

Why my son is crying- I told him I was out of yogurt.

Why my son is crying- I told him that he finished his yogurt.

A luck would have it, Alexander chose not to nap after his morning-o-doctors.  This resulted in the remainder of the day being comically painful as his sleep-deprived, cold-ridden self was not having it. He picked fights over water, dinner, yogurt, lack of yogurt, being cut off from yogurt* (see a theme here?), and being so tired he couldn’t stand up! He stumbled around like a tiny, drunk t-rex– it reminded me an incredibly funny blog about parents documenting why their child is melting down. While I hate to seek pleasure in my son’s discomfort, usually the melt down is about  something so trivial or silly, that it’s hard not to laugh on the inside while trying to calm him down.  I know Friday’s evening of squeals, crying, and tears was just a hint of what we’ll have in store for us this week once Alexander finds himself once again in his little arm cuffs.

Even though we are preparing ourselves for yet more hibernation while our little man heals and recovers, we look forward to the possibility of him being able to eat non-pureed birthday cake for the first time this year! Please continue to keep us in your thoughts and prayers this week– if we can make it through surgery #3 and a pretty severe case of cabin fever, our family can do anything!

Note to self- giving your napless child drumsticks an hour before bedtime is not the best idea.

Note to self- giving your napless child drumsticks an hour before bedtime is not the best idea.

*Yogurt is a very delicate subject in our house. I vowed I’d never start spelling things, but after an entire day of arguing through ASL with Alexander about why he needed to eat more than just greek yogurt (his response– “More yogurt! No milk! No cereal! More yogurt!”), we are cautious about bringing up the “cultured dairy product that shall not be named” lest we set off a barrage of signing about why he is still hungry and must eat more aforementioned cultured dairy product in order to be a well-adjusted young man.