Friday, January 25, 2013

Every Little Thing

As those of you that are on Facebook with me/follow my Facebook page know, Wednesday was a bit of a surprise.  I came home from my last night shift on Tuesday morning to a phone call from Sick Kids hospital, asking to move the appointment for Wyatt's sedated echocardiogram/ECG up.  Way up.  Originally the appointment was for April 3rd;  we had set it up a week ago and I just submitted the paperwork to ensure that I had that day off.


Instead, it was to be the next day.  According to Sick Kids, Wyatt's regular cardiologist (the one with the fish) was a little annoyed that the appointment was to be so far into the future.  It was also one of those situations where it was either going to have to be Wednesday or the following one, where I was working nights, so the decision wasn't much of a stretch.  However, we're still not fans of the "how about tomorrow?" appointment, because the last time that happened, Zoe ended up having surgery.  Going to downtown Toronto isn't all that easy for us these days either.  We have three kids, a giant-ass van that does not like underground parking much and a drive that will range from an hour to three hours, depending on traffic.  Sean and I hummed and hawed over it, considering our logistics.  However, it was a needed thing, so to my way of thinking, it was best to seize the moment and get it over, like ripping off a band-aid.

We went for the band-aid, trafficky, potentially van scraping option.  A dear friend kindly offered to look after the Zoester and Quinn for the day, which eased things a bit.  The night before, we hatched our plan:  we had to be there for 8:45, so we had to drop the kids off between 6:45 and 7, hit the highway and pray that the rush hour traffic gods were kind.

Not surprisingly, they weren't.  At 8:30 we were well ensconced on the Gardiner "Expressway" and had no idea how much longer we were going to need to get to a hospital that was 10 minutes from that spot.  Despite the gorgeous view of the rising sun filtered by the steam devils spiraling up off Lake Ontario (with a few silhouetted leafless trees here and there), I wasn't happy.  I called ahead and cooly slid into the registration desk around 9:25.  I was in much better shape than our last Sick Kids appointment a year ago;  Sean scored some decent parking across the street for the Whaaambulance and joined me a few minutes later. When he caught up with us, Wyatt and I were firmly entrenched in a game of "socks", where he pulls off one of them (he had already lost his shoes in the van), laughs, wiggles his toes and waves the sock around, daring me to grab it.  Which I always do and put it back on his foot, because that's what Mommies do.  It's a lot of fun and his giggles were infectious. 

We were eventually called in and Wyatt was weighed, measured and dressed in a little flannel gown.  He was hooked up briefly to get a set of vital signs and you could hear the warning-panic in the nurse's voice as she called out to her colleague "He's SATing at 94!"  I calmly explained to her that this is normal (for him), no, he doesn't require oxygen and he has an AVSD;  eventually she settled down and went about her morning.  Wyatt checked out his new digs while I answered all the pre-sedation questions.  He burbled happily and was very interested in all the grown up goings-on around him. 

My kids are used to getting oral liquid meds, especially after our last round of colds/flus that rampaged through our house in the late fall and early winter.  A nurse handed me an almost full 10 cc syringe and Wyatt opened his mouth expectantly.  They asked me if I needed to wrap him (to restrain him) and I just looked at them, astonished.  This had never occurred to me, even though I restrain people for a living.  I can count on one hand the amount of times I've had to hold his head for medication and then after the first taste, he stops protesting and finishes the dose.  I waved their offer away and went to give it to him.  He can only take a little at a time to make sure that he swallows it, so this was going to take a few moments.  After the first little squirt went in he naturally made a face (chloral hydrate tastes awful, I put in in OJ for my patients), but opened his mouth again trustingly for another round.  After the second time, he turned his head away and I was in the middle of coaxing him back for more when the one nurse suddenly grabbed his face while the other grabbed his hands.  

Naturally, he fought back, but I managed to get the needed amount in there.  He's cutting three teeth on the one side of his face, so I'm sure that was throbbing by the time the one nurse let go.  I was shocked to be honest...  As I've said, I do this all the time with adults but I am telling you now that I give even our most ill of patients more time to make up their mind than that.  I understand things were behind schedule and that lots of kids probably need the cat-wrap method of medication administration, but mine isn't one of them.  Not surprisingly, he was completely pissed off, hurt, was not compliant with anything else and he let everyone present know exactly how incensed he was for a very, very long time.  The nurses disappeared in a swirl of curtain and we were left with our screaming little boy.  We walked, we jiggled, we did the parent dance.  I would sing to him quietly and his crying would taper off a bit, especially as the medication started to kick in, but he would still screech at random intervals.  He became very selective with his song choices as he would react poorly to certain songs and be super happy at others.  His favourite seemed to be Twinkle Twinkle Little Star.  Even the ABC's or Baa Baa Black Sheep was not good enough,  it had had to be Twinkle Twinkle... (as a side note, this is Zoe's favourite song).   He would request it, throwing his hands up in the air to mimic the "up above..." part and throw his head back and half laugh/half scream and almost catapult himself out of my arms.  He did this over and over and over again as I sang in my early morning "I need coffee" cracking middle aged voice.  You could almost hear him say: "Twinkle, Twinkle, dammit!  SING IT, Mama!  WOOOOO!"  As it turns out, my wee son is an angry drunk. 

The dose he got would have knocked out quite a few adults, but he fought the sedation for as long as he could.  His eyes would close, his breathing would change and I would think "he's out..." and he would suddenly cry out and try and sit up and yell at us some more, almost as if to say "...AND ANOTHER THING!..." He would swing out at us blindly and generally let us know that we were all a bunch of jerks (and he wasn't going to stand for any of it).  Four times I watched him do this... the third time I laid him on the bed and held him with my hand at the back of his head, stroking his forehead and singing softly to him.  The tech that was to do the echo wheeled in the machine during all of this and appeared to be quite put out that he wasn't asleep yet and should he get more sedation?  I explained (over the howling) that he was pretty annoyed and that he had quite a lot of sedation already , but she didn't seem to get it and pouted off.  The fourth and final time, a full forty five minutes after we gave him his meds, Wyatt was finally down for the count.  I exhaled, exited the curtain with Sean and told the nurses that we would be back in another 45 minutes, the length of time the tech told me the test would take.

We went downstairs, had breakfast, doused my (now sore) voice with some tea and relaxed for a few minutes.  We were punctual and a little concerned to see the curtain still around Wyatt's crib when we returned.  Ten more minutes, we were told, as the tech waved us away.  We went outside to the waiting room and came back ten minutes later to be told it would be yet another few minutes.  I chose to sit at the bedside, which turned out to be the right decision as it was apparent that Wy was starting to wake up.  The tech said she was finished, we wiped off the goo and started about the business of getting him sorted out.  She whipped back in a moment later and stated she needed two more angles;  the nurse and I rolled our eyes at each other as Wyatt was now very much awake.  He was given a small bottle of baby juice (which he never has;  we give him diluted regular juice) and not surprisingly, he and his post-sedation cotton mouth LOVED IT.  The look on his stoned little face said it all after the first sip:  This was the best freakin' juice EVER!  It also kept his hands busy for the 5 minutes that was needed to get the last two shots.  She shut off the machine, went to speak to the Dr., and we set about getting our still drunk, but now happy, boy cleaned up and dressed.  He was sticking out his tongue and laughing at people, not to mention trying to blow raspberries (which wasn't that successful, yet still hilarious).  We were having a great time when the tech came back and insisted that there were "just two more pictures" that the radiologist wanted.  The nurse and I exchanged looks again as I unbuttoned Wyatt's shirt and fed him more juice.  I let the tech know that this was the last time and if the doctor wanted any more views, he could come get them himself.  Again, she pouted off, but I was beyond caring.  I wasn't a fan of her "make it stop moving" attitude towards my son and for the love of all that is holy, I could have done that echo faster.

Still giggly-wobbly and working on his juice, Wyatt went back into the stroller and we set him on a 45 degree angle.  It was now almost noon, our appointment with the cardiologist was supposed to be for 10:30 and for some reason, the tech didn't have time to do a simple 12 lead ECG. (?!)  We went over to the cardiac clinic and hung out in the waiting room for a bit.  We ended up being called in prematurely and had to go back to the waiting room to wait for our ECG, but finally, around 12:30, we got to see the Residents. 

I don't make it a point of outing what I do and who I am, but there are occasions that definitely call for it.  An assessment of your son by a second year Resident can be one of those times.  She was quite nice, but a bit flippant and hadn't quite hit her health teaching/talking to people stride yet.  (Or, maybe I was tired and hypersensitive to her body language... or both.)  About the point she started talking very slooowly I let a few bits of jargon slip.  When she asked why he had never landed in the ER, I told her flat out I was an RN.  The conversation changed dramatically after that.  I swear she even sat straighter in her chair.  That completed, her and her colleague attempted to do a physical assessment on Wyatt, who after his morning ordeal, would have none of it.  He playfully dodged all their attempts at distracting him with various medical equipment and wouldn't allow them to do a damn thing.  At one point he expertly blocked the stethoscope with one hand and yanked it off her head with the other.  I was thoroughly enjoying this until he started to get upset when one tried to hold his arms, at which time I went over, let him grab my fingers and we babbled to each other quietly while she attempted to auscultate the backwash of blood through the holes in my son's tiny heart.

The mood changed again a few minutes later with the arrival of the cardiologist.  With an expert touch, he said hello to Wyatt, held his hand, touched my son's chest and got 'permission' to use the stethescope.  He was so smooth that you barely saw it happening; he was finished listening and well into teaching the Residents about the Wyatt's various heart sounds like it was nothing at all.  Each of them got to listen as well, which proves once again that a respectful approach to children (and a little bit of patience) works like a charm and you don't always have to break out the restraints.  I still hold the hospital in very high regard, as should all of you.  However, I think with our comedy of errors that day, we got the "B" team.
The cardiologist had reviewed all the data and there was some good news.  The VSD part of his AVSD (the hole between the ventricles) had closed and was no longer an issue.  He was surprised and I was a bit smug, as it had done exactly what he told me it would not do (and what I said it would).   The two holes of his ASD however, still need repair and his shared-but-kinda-not-really valve(s) need complete separation.  His surgery could be done now, or based on the current results, could be quite comfortably done a year from now.  Sean and I looked at each other.  My husband raised some very valid concerns about Wyatt's development, his potential for back sliding and how it might actually be less detrimental now than a year from now when he is (hopefully) walking.  The Doc looked at me and I shrugged, validating Sean's concerns and indicating that I looked at this reasonably mechanically and that the sooner it is fixed, the better he will be and the sooner we can put all this behind us.  He nodded to both of us and agreed to present Wyatt's case to the surgeon, who will ultimately decide on a surgery date of either now or a year from now, but quite probably, we will receive a phone call in 3 to 6 months for his pre-op appointment.  His surgery would be shortly after that. 

This is going to sound silly to some of you, but one of my major fears all along is that somehow, at some random time, his heart was going to destabilize and be in big trouble.  I have been living with this fear for two years ago this month, when I found out about his AVSD in the first place.  This fear seems to have gone for the most part, in the large sigh I let out as we wheeled my once again unconscious son down the hallway and headed for the elevator. We still have scary-open heart-surgery fears looming on the horizon, sure.  There are also a lot of 'maybes' in this schedule, which for me, has to be planned pretty much in advance to ensure that I have enough vacation time, etc.  But, it is more than we had going in.

Wyatt was pretty sleepy for the rest of the day and would nod off at regular intervals.  I had to physically sit with him on the floor when Sean went to get the other two kids as he would fall asleep sitting up and bowl over.  Both of his siblings missed him; Zoe apparently started saying "Wyatt! Wyatt!" the moment she laid eyes on the van.  When the open door didn't reveal her twin, she looked around and then turned to her father, asking "Wha Wha Wyatt?"  Sean explained to her that he was at home and she immediately began to pout and well up.  On arrival, I could hear her at the front door continue with "Wha Wha Wyatt!" and her shoes click across the hardwood.  She strode into the livingroom, locked eyes with her twin... and strode on past him with barely a nod.  She missed her big brother, but she's just too cool to make a big deal out of it, apparently.  She's not very good at maintaining this little charade however, as she has been bringing him toys and addressing him by name very frequently since then.  Of course, this only happens when she thinks we are not looking.  Wyatt has suffered no ill from his experience and has returned to his normal, happy self. 

When I got back in the van after dropping the kids off Wednesday morning, Three Little Birds came on the radio.  I updated my Facebook status, hoping that it was an omen for our trip (as Sean and I were doing anything but smiling with the rising sun).  As it turns out, it was a portent of sorts.  Things did turn out to be okay, despite all the stress and shenanigans.  We have a kinda-timeline and a better understanding of what is happening with our son.  Wyatt will need surgery, but it is for another day.  As I said to the cardiologist on Wednesday, we were expecting him to go into CHF shortly after he was born... and he didn't.  We expected it by three months, by six months, by a year and instead, he has defied everything and is thriving.  With the closure of the VSD, he has been given an extra little boost.  His lungs are clearer and he has more energy to explore his world and learn new skills.  (Which he is, as he is trying to pull himself up at any opportunity).  As his Mom, who knows a little too much for comfort, I have been waiting for the other shoe to drop for two years.  With our trip downtown, 'every little thing' was not perfect, certainly.  For the the first time in years however, I feel like things are finally going to be all right. 


  1. Wow, it sounds like it was a pretty draining day but you got through it, and Wyatt did. I hope that the surgery dates all work out for your schedule (you mentioned vacation time) and please know that your family is in my thoughts. It sounds like your Wyatt is a fighter and for all the right reasons :)


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