Friday, April 12, 2013

Surgical Suite: Grave*


It was here.  Wyatt's surgery day.  The day that we had been both dreading and waiting for for over two years was upon us.   Regardless of how well he grew and developed, it was always there, playing quietly in the background, undermining our confidence. It was time to address this now... it was time to change the song.  It was time to mend this broken heart.

The day started with a whimper, at least for me.  0300 is no time to be getting out of bed, but here we were, shuffling about our morning.  There was some last minute packing to do along with our usual morning things, which we did dutifully (albeit much slower). With one eye in the clock, I had opted to forgo my morning Tassimo and intended on picking up some much needed coffee en route.  We loaded our wee man in the car, a few minutes shy of 0430.  We were also very grateful for our friends who had volunteered to take Quinn and Zoe for a sleepover the night before.  While we three drove off into the night, our other two children slumbered, blissfully unaware of our growing tension.

My hopes for early morning coffee were dashed a few minutes later when I realized that it was too early to expect the Tim's in the gas station to be open. With traffic being so unpredictable, we had to press on.  The trip turned out to be fast and reasonably uneventful;  any and all traffic fears were quickly put to rest as we presented to the desk in cardiology at 0545, 15 minutes early.  Early, yet still coffee-less.

We were shown to a room and waited for our intake nurse.  Wyatt was in great spirits and had a good time playing with his dog "Scout" and his little jingle lion.  His nurse arrived to assess him at 0630 and it was at that time that we learned that we were going to be "second case".  This meant that we were going to have to wait until somewhere between noon and one o'clock, depending on how long the "first case" (first surgery) took.  Sean was noticeably upset and a bit curt with his response.  I shrugged it off... it wasn't her fault, yet he was right with what he said next.  This was exactly the kind of thing we had learned to expect from the hospital;  hurry up and wait.

Wyatt was his usual, giggly self.  I gave him his chlorhexadine scrub and changed him into his hospital jammies.  They were miles too big, so the results were a bit comical.  We were in one of the rooms with a daybed and with turning down the lights and closing the blind, we all had a little siesta for an hour or so. 

At 0830, Wyatt was allowed to have a container of apple of juice and he had 5 mins to drink it in.  He was pretty grateful and super happy, once he tasted that it was full strength and not diluted (which is what he gets at home).  After he had his juice, I headed downstairs in search of breakfast (mainly coffee).  While I was gone, Wyatt got to explore the playroom, including having a satisfying game of "Cloverfield on the Island of Sodor". He was tired when we got back, so I returned him to his "baby jail" crib and we snapped a few pictures for posterity while Sean headed off in search of breakfast.

Wyatt, showing off in Hammer Pants
By 1000 we were pretty bagged out in the room.  I was sprawled on the day bed, my sweater a blanket and jacket a pillow as I texted friends looking for an update and generally goofed around on my phone in my efforts to ignore the elephant in the room.  One of the surgical team had come in, made a positive ID check on Wyatt and inked his shoulder... which immediately transferred to his chin once Wyatt looked down to check out his new tattoo.  We had abandoned trying to keep Wyatt's pants on, as he would only wiggle out of them and then try and throw them at us.  After all, pants are for suckas.  By  1100 we had discovered the TV and the familiar noises of the Price is Right filled our tiny room.  By noon we were all in a drowsy haze.  By one thirty we were suddenly grabbing up all our things and heading downstairs to surgery.

We met the anesthesiologist and three of the nurses.  Before I knew it, it was time for Wyatt to go.  He so content chatting and flirting with the ladies that he barely noticed me kiss him goodbye and whisper a few things into his ear.  I was already fighting tears as I wheeled the stroller over to the surgical waiting room and checked in with the volunteers.  We had barely found our seats when we looked up to see ourselves being scoped out by another man in scrubs.

You have to understand, I am used to crotchety old surgeons, or cocky young hotshots with demigod complexes.  It was a great relief to find out that the kind eyes that met ours belonged to Wyatt's surgeon.  In a soft British accent, he apologised for not meeting us on our pre-op day as that is not the way he generally likes to do things. He explained the surgery once again, emphasizing the seriousness of the procedure and giving us some statistics to ponder.  In reality, 95% of all children that undergo this type of surgery survive and do well afterwards. However, there is a significant number that do not and that had to be appreciated.  He explained in more detail how he planned to repair the AVSD and the steps afterwards to get Wyatt off the heart lung machine.  He expressed his intent that Wyatt be woken up in the OR afterwards and hopefully get the breathing tube out as that would speed his recovery even further.  We shook his hand. I was trying to be nonchalant about wiping my tears away as we wished him good luck as he left to go fix my son's heart.

We went downstairs again with the intention of getting something to eat, but on my way into the food court, I found myself breaking down.  I was tired, frustrated and flat out scared for my son's life.  Food suddenly seemed to be a foreign concept.  Through a veil of tears, I found a table at the back of the cafeteria where I could park our stroller (now filled with coats and bags) and let free the tears that threatened to fall.  I checked in with a few friends and read the hundreds of good wishes, prayers and morale boosting messages left on my personal Facebook page, my group, the Down Wit Dat page, my email and text.  My friends had entreated their friends to keep Wyatt in their thoughts and people that I did not even know were rooting for my son.  My spirits lifted a little and I ate the half of Sean's sandwich that he had abandoned with a bout of similar nerves.  We found ourselves some tasks to keep occupied--drop off the stroller at the car, check me into my hotel room, check in with the kids--and went about completing all of that.  We even attempted to have a bit of a nap at the hotel, which didn't work out as I was restless and could not settle.  With nerves taught and almost audibly twanging, we headed back to the surgical waiting room.

We checked in again and let the volunteers know that we were popping downstairs to grab a bite.  She suggested that we run and grab something quick and then head back up, given the time.  Sean suddenly realized that he had to go "feed the meter" on the van and I headed up alone.  I had barely gotten situated when I looked up to see the surgeon walking in.  Wyatt's name was still on the board as "in surgery", so my surprise quickly changed to concern when I rose to meet him.

The surgeon's portion of the procedure was over.  Wyatt had tolerated it well and at that moment the rest of the surgical team were assessing the bleeding from the suture holes in his heart and once that had stopped, they would close the incision.  The surgeon was pleased that things had gone so well yet expressed a little remorse at the breathing tube having to remain in for a while longer.  He was able to close what was left of the VSD (it looked closed, but he put a couple of stitches in it for good measure). He had separated the common valve and created the two Atrioventricular valves and using a patch of Wyatt's own tissue, closed the hole in the ASD.  The valve on the right (tricuspid) was functioning quite well according to the echocardiogram that they had done on him immediately afterwards, however the one on the left (mitral) had a small amount of leakage, which was normal.  It would be possible, in the future that his valves would require a "tune up" and that Wyatt would have to be monitored by a cardiologist for the rest of his life.  He expressed that there were still a lot of things to occur this day, including assessing lab results to see how the rest of Wyatt had fared during the surgery.  Things looked promising, but the surgeon stressed that my son was far from out of the woods yet. 

An hour later, we got to see him for five minutes before shift change.  He was unconscious and still a bit of a mess.  He had two drains, an art-line in his groin, a central line in his neck, two chest drains, two pacing wires, a catheter and two external IVs, one in his hand and the other in his foot. His nurse told us that the team was waiting to see the lab results and based on those findings, he would be either extubated or left intubated for the night.  With shift change pending, we would have to leave for rounds;  once we returned after 8 pm we would know more about his status.  The tears came again as I whispered more words into his sleeping ear.  He stirred a little as I welcomed him back.  He knew I was there.  We took our leave once more and went to the waiting room to make necessary updates to family and friends.

We were completely exhausted by this point.  Our friends who were minding our other two kids insisted that they stay with them one more night;  Sean was to get some sleep with me at the hotel before attempting to drive home.  We ruefully agreed;  although we both missed the kids, they were happy and healthy and completely removed from all of this.  For that, we will be eternally grateful. 

I dialed the CCU's number at exactly 8 p.m. and were asked to wait 10 more minutes.  That turned into 15 minutes in the next call and then 15 more in the one after that.  In the meantime, a code blue had been called that had caused me to almost jump out of my skin.  There had been a few more occur that day and every time it knocked the air out of me.  I was starting to get a little frantic as I called in a fourth time;  thankfully, they let us in and I quickly went to his bedside.

You could tell that he was starting to wake up.  He would grimace and try and open his eyes. Although he was still sedated somewhat from the anesthetic, he was given morphine for pain and midalozam to help him relax and not fight with his apparatus.  Even still, he was obviously in pain as I stroked his foot and talked to him.  They topped up his pain meds while we were there and I started chatting with his nurse.  His tests were back and were good, but they were thinking on leaving him on the breathing tube overnight as a precaution. As he continued to fight to regain consciousness against the medication, I realized that our presence was not helping him sleep and heal.  We double checked phone numbers and gave instructions to his nurse to call us at the smallest change.  We kissed Wyatt goodnight, knowing that he was in capable hands and headed back to the hotel for a much needed drink and to catch a few hours sleep.

We were downstairs in the bar having a quiet glass of wine when my phone rang and caused the panic to rise again as I fumbled to answer it.  Wyatt's nurse called to tell us that Wyatt was now fighting the ventilator, trying to breathe over top of it and regain control of his breathing.  With this in mind, they had extubated him after all.  They would continue to keep an oxygen mask nearby ("blow by"), but he seemed to be doing very well breathing on his own.  I thanked her for a call and promptly ordered another glass.  My heart was still pounding and despite our current level of fatigue, I was going to need a little help to sleep that night.

Despite my best efforts, I cannot capture exactly the gnawing agony that followed us this day.  Although he has always required this surgery, he has been very healthy thus far.  You have all sorts of emotions that you encounter along the way, including the crushing guilt of potentially putting your child in harms way. You feel alone in your anguish and would do just about anything to take your child's pain onto yourself if it such a thing were at all possible.  I think one of my friends said it best as she posted the following to lift our spirits:
"Here's to being brave and scared at the same time. Here's to giving you room to be as you are, and to holding you all in the tightest of hugs. Here's to crying one moment and then laughing til you cry. Here's to forgetting to breathe and then breathing more deeply than ever..."
As we finally caught our breath after a day that seemed like days, we knew we were not alone in our relief.  The love of hundreds had enveloped us and helped us bear an emotional battering.   We would need it still, in the days to come.  However, this first step, this opening movement had been completed.  As the last notes of the day ebbed away, I closed my eyes and felt peace, for the first time in a very long time.

--------
*Grave (grah-vay) meaning slow, serious.


The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda

20 comments :

  1. You are in my thoughts. Strength to you.

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  2. You are so brave. A champion for your son. And it sounds like now there's going to be some room to breathe. I'm very glad for all of you. You've been in my thoughts all week. <3

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  3. So relieved to hear round 1 complete. Thank you for sharing the news, we continue to think of Wyatt in his recovery.

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  4. I was thinking about you all. Glad the worst is behind you! That is a long, long day.

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    1. I swear that day was three days. I was very glad to see the back of it too. Thanks.

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  5. I'm so happy that everything went as it did and so excited to learn what all Wy has in store for us now that he's rockin' a mended motor.
    Much love and clink.

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    1. Clink and thanks and much love back atcha. He's so much better, I can't even tell you. He's just so more... himself? Yeah!

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  6. Glad to hear good news. Since you're not *completely* 'out of the woods', it's not too late to wish you guys good luck. Reading this was heart-wrenching, and it's knowing about surgery like this that keeps me calmer when we don't have a totally unambiguous all-clear from our cardiologist.

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    1. Thanks Axel. Things do work out. Any info I can give you, I would be more than happy to.

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  7. Glad you're over the first hurdle! Thought of you guys while I worked yesterday in the NICU - one of the little patients I took care of recently is a twin with Ds...

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  8. Oh, I'm so glad things went so well! And getting off that vent is fantastic! :-)

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  9. Thinking of you and your lovely boy!
    Sending ((hugs)) and positive thoughts

    Leah

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    1. Thanks Leah! Although I am terrible with the replies, I did see this and it did help. :)

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  10. Stay strong Mama. Whining with wine is good I find.

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