I woke up at 0300 again, this time to a nurse tiptoeing in to let me know
that it was time for Wyatt to have more Tylenol. He was fast asleep and
comfortable, his breathing easy. It was decided to leave him for now; she left the dose in case he woke up and I went back to sleep. I was awake at 0800
again to find him still comfortably asleep, despite now having missed two doses of Tylenol. This was fabulous; his pain was
obviously controlled, he was eating and drinking, all his tubes were out
and all that stood between us and home in a few hours was whether or not he could poop.
By nine we had to wake him up to do vital signs, give him his morning Lasix and get breakfast into him. I went to wake him... he stretched catlike and opened his eyes with a smile, which rapidly turned into a frown once he saw the syringe. We tussled briefly over meds, we hugged and went about the business of getting him sorted out for morning. I opened the blinds at one point and instead of being greeting with the usual rain and gloom, I was almost startled by sunshine and fluffy white clouds. It was a beautiful morning, made even more so by the promise of home.
The NP came by, had a good listen and gave a little health teaching re: his rashes and dressings. His drain dressing was to come off the next day and as far as she was concerned, she was going to recommend him for discharge. I ordered his breakfast and when that arrived, started the process of getting it into him as rounds were going to be in a short while.
It seemed silly to get him dressed again before giving him breakfast, so he ate it shirtless (and pantless, but you know our feelings on pants). He didn't care; he was hungry!
You can clearly see from the photo that the incision is looking good. Also present are the bandages over his drain sites. To the right of the incision is one of the holes left from the pacing wires. The redness on his neck is excoriation from the dressing over the central line.
After a pancake and some oatmeal (which, in our house, cures everything) and one of his cups full of juice, he was ready for a cleanup and to get dressed. Before breakfast, his nurse had given us a small vial of powder to mix in his juice if he didn't have a bowel movement. I smiled at her and told her I'd mix it up, but I'd first give him a chance as he normally went after breakfast. She looked at me oddly and moved on. Sure enough, a few minutes after breakfast, Sha-ZAM! I don't think I've ever been that happy to change a diaper.
I had him washed, dressed in a plaid shirt and soft cargo pants and socks (which, he immediately whipped off), myself cleaned up and the room straightened before rounds appeared. During the initial presentation to the group by the NP I realized something. Until she mentioned it as an afterthought, I hadn't heard the words "Down syndrome" or "Trisomy 21" in reference to Wyatt since the anesthesiologist mentioned it just before his surgery (as an aside). It was the same in rounds, at report and at shift change. Even in places where you would expect it to be mentioned, it wasn't. I can't tell you how comforting that was for me. He was just a boy in their eyes. A boy who needed his heart fixed, who had it fixed and was now avidly chewing on one of his socks. He was not defined by this extra chromosome; his worth, his eligibility for treatment, his person-ness had nothing to do with that. The tears threatened to well up again, as I was eternally grateful for this subtle yet important change.
The NP popped back in as the others moved on down the hall to let me know that she was going to work on his discharge orders. I should tell my husband to pick us up between 12 and 1230. As it was 1030 now, we had some time to wait, so Wyatt and I alternated between playing and watching TV. We received our final orders, a prescription for Lasix (which he would take once a day for a week), hydrocortosone for his rashes and Tylenol for pain relief. We waited for Sean to arrive; he would be at least 45 minutes late due to an accident on the Gardiner Expressway, but that didn't matter as I wheeled the first load of luggage out through the unit doors into the hall and hugged the stuffing out of my family when they did arrive. Quinn was playing it pretty cool, but Zoe's hysterical "Mama! MamamamaMAH MAH!" echoed throughout the Atrium.
Our luggage retrieved, "Why-ATT!!!" received happily by his siblings, we made our way downstairs. On one of our first visits there, what seems so very long ago now, I tossed a penny in the fountain with a wish. I have kept up that tradition; every night before I went to the hotel or on my last visit downstairs, I would stand in exactly the same spot, bring a Loonie to my lips and then let it sail into the fountain after asking whoever was listening for a little extension on our luck. Before we left en masse, I stopped our family in the Atrium and quickly dug out a Toonie. It touched every single one of our lips before it too landed in the water, after I thanked the powers at be for listening to this mother. This obstacle, this issue had been overcome. That little undermining ditty had finally been silenced after all these years. Despite the giant backpack I was wielding, I felt lighter. Wyatt could not stop smiling and Zoe would not stop babbling about him. Our prescription collected (along with a coffee for me), we walked out into the afternoon and into the rest of our lives.
The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda
By nine we had to wake him up to do vital signs, give him his morning Lasix and get breakfast into him. I went to wake him... he stretched catlike and opened his eyes with a smile, which rapidly turned into a frown once he saw the syringe. We tussled briefly over meds, we hugged and went about the business of getting him sorted out for morning. I opened the blinds at one point and instead of being greeting with the usual rain and gloom, I was almost startled by sunshine and fluffy white clouds. It was a beautiful morning, made even more so by the promise of home.
The NP came by, had a good listen and gave a little health teaching re: his rashes and dressings. His drain dressing was to come off the next day and as far as she was concerned, she was going to recommend him for discharge. I ordered his breakfast and when that arrived, started the process of getting it into him as rounds were going to be in a short while.
It seemed silly to get him dressed again before giving him breakfast, so he ate it shirtless (and pantless, but you know our feelings on pants). He didn't care; he was hungry!
 |
| I can has pancakes? |
After a pancake and some oatmeal (which, in our house, cures everything) and one of his cups full of juice, he was ready for a cleanup and to get dressed. Before breakfast, his nurse had given us a small vial of powder to mix in his juice if he didn't have a bowel movement. I smiled at her and told her I'd mix it up, but I'd first give him a chance as he normally went after breakfast. She looked at me oddly and moved on. Sure enough, a few minutes after breakfast, Sha-ZAM! I don't think I've ever been that happy to change a diaper.
I had him washed, dressed in a plaid shirt and soft cargo pants and socks (which, he immediately whipped off), myself cleaned up and the room straightened before rounds appeared. During the initial presentation to the group by the NP I realized something. Until she mentioned it as an afterthought, I hadn't heard the words "Down syndrome" or "Trisomy 21" in reference to Wyatt since the anesthesiologist mentioned it just before his surgery (as an aside). It was the same in rounds, at report and at shift change. Even in places where you would expect it to be mentioned, it wasn't. I can't tell you how comforting that was for me. He was just a boy in their eyes. A boy who needed his heart fixed, who had it fixed and was now avidly chewing on one of his socks. He was not defined by this extra chromosome; his worth, his eligibility for treatment, his person-ness had nothing to do with that. The tears threatened to well up again, as I was eternally grateful for this subtle yet important change.
The NP popped back in as the others moved on down the hall to let me know that she was going to work on his discharge orders. I should tell my husband to pick us up between 12 and 1230. As it was 1030 now, we had some time to wait, so Wyatt and I alternated between playing and watching TV. We received our final orders, a prescription for Lasix (which he would take once a day for a week), hydrocortosone for his rashes and Tylenol for pain relief. We waited for Sean to arrive; he would be at least 45 minutes late due to an accident on the Gardiner Expressway, but that didn't matter as I wheeled the first load of luggage out through the unit doors into the hall and hugged the stuffing out of my family when they did arrive. Quinn was playing it pretty cool, but Zoe's hysterical "Mama! MamamamaMAH MAH!" echoed throughout the Atrium.
Our luggage retrieved, "Why-ATT!!!" received happily by his siblings, we made our way downstairs. On one of our first visits there, what seems so very long ago now, I tossed a penny in the fountain with a wish. I have kept up that tradition; every night before I went to the hotel or on my last visit downstairs, I would stand in exactly the same spot, bring a Loonie to my lips and then let it sail into the fountain after asking whoever was listening for a little extension on our luck. Before we left en masse, I stopped our family in the Atrium and quickly dug out a Toonie. It touched every single one of our lips before it too landed in the water, after I thanked the powers at be for listening to this mother. This obstacle, this issue had been overcome. That little undermining ditty had finally been silenced after all these years. Despite the giant backpack I was wielding, I felt lighter. Wyatt could not stop smiling and Zoe would not stop babbling about him. Our prescription collected (along with a coffee for me), we walked out into the afternoon and into the rest of our lives.
The Surgical Suite:
Prelude - Grave - Allegro con brio - Adagio - Allegretto con moto - Finale - Coda
Even though I have no idea what (or who, hopefully not a who) a loonie is, that almost made me cry. Not joking.
ReplyDeleteA loonie is a Canadian dollar coin. It is called that as it has a picture of a loon on it. A Toonie is a two dollar coin, that is bicoloured and does not have a loon on it.
DeleteAnd, thank you. :)
Delete