*trigger warning - very sensitive topic for me, so there is profanity in this post. Just keepin' it real.
Whether it's bad timing (for real, it's ALL bad timing) or whether you're there for a long-term stay like we were... there's no worse place to be to celebrate anything remotely fun or joyous... however, SickKids for one is really amazing at keeping every single holiday spirit alive. I feel like they have a list of random holidays and even celebrate those ones too, like National Book Day or something.
As for the bigger holidays and events, no one ever wants to be there for that.
We missed a ton of holidays when we lived there for ¾ of a year. Starting with Easter, Mother's Day, Father's Day, Canada Day, both long weekends, Thanksgiving (which was the hardest for us), & finally Halloween.
Thankfully, we were home just in time for Christmas.
The Ronald McDonald House does the most amazing things for parents during these special days. Both Mother's Day and Father's Day we were greeted with a bag of goodies that were donated by different families and companies. It was a great pick-me-up! Very much appreciated!
As for spending so many days at the hospital… I'll be real with you, it fucking sucked. We missed out on Summer BBQs, cottage nights, bonfire drinks and laughs… Thanksgiving hurt the most because it's the beginning of the holiday season - all the big cozy family get together ones.
We stayed with Adam while our families got together and had the most delicious meals and laughs, with cousins joking and football games on tv (ROLL TIDE!). We opted out from celebrating Thanksgiving at all - my parents offered to cook and bring it to us, but we wanted nothing to do with it. Out of sight out of mind. We made it just another day. It sucked so bad.
As for Halloween…. Hah. Spooky, terrifying, haunting… all a gross understatement.
October 30 was the last day we were in the CCU. After a miraculous conversation and fiiiiinally an extubation, Adam was given the go ahead to go back upstairs and back "home" to 5B.
When we arrived that night, I finally felt that I could relax. That for the first time in what felt like forever, we were in the clear, we were safe… we were on our way to going home!!!!!!!! We had our nurses back, familiar faces, the happiest of greetings seeing Adam had a successful surgery and missing his sweet face for a few weeks…
It wasn't all rainbows and butterflies though. Every single person tried to convince me to go back to RMH (I literally LIVED bed side in the CUU) ...I know, gross - didn't leave to eat or shower… I know, I know… but when you're watching your healthy baby now hooked up to a machine breathing for him, I literally could not leave his side.
So I stayed the night in 5B.
I'll keep an already long story somewhat short, but that night around 1 or 2am ...after NUMEROUS times of me BEGGING our not-so-favourite nurse to change Adam's NG tube tapes….she didn't.
Adam pulled it out.
Keep in mind throughout his entire CCU stay they literally had signs over his bed, our 5B Fellows would come in daily to make sure NO ONE TOUCHED OR MOVED THE NG. It was acting like a stent so that his repaired esophagus could HEAL properly.
If it was moved or touched it could tear his anastomosis (Lord, there's a trigger word) ...it means it could tear his repair, the surgery would be pretty much useless if it unattached because of the removal or movement of the NG, as it was left in place for his esophagus to heal around it.
Adam's surgeon wanted it in as long as possible to make sure everything was perfectly healed, it was to be removed a few days before we went home, so like a month - NOT 15 days.
So I closed my eyes for literally 5 seconds (honest to God, the first time I "relaxed" in WEEKS, finally feeling safe back on 5B…. to open them to Adam laughing with something in his hand.
Groggy and confused af, I think to myself "umm he pulled out his replogle…. Omg he doesn't have a replogle anymore… his NG!!!! THATS HIS F&*$# NG OMG!!!!!"
Guys, I screamed so damn loud… I lost my shit. Total understatement. I absolutely just lost it all. I'm talking like screaming, crying, panic attack, full blown ugly cry, shaking, not breathing… panic beyond panic.
A friggin CCU nurse was dedicated to making sure Adam's head and this damn NG tube DID NOT MOVE A MILLIMETER…. and now it's in his hand. He pulled the whole thing out up through his esophagus and out of his nose. Jesus take the wheel! I thought I was going to pass out.
I told the nurse numerous times she NEEDED to redo his tapes because it was waaaayy too loose and not secure. She said she'd do it. I swear I asked her a hundred times. I feel asleep for 30 seconds, she went on break, ignored my request AND THIS HAPPENED.
Y'all I lost it. When I came back to, after nearly passing out… the panic was so dang strong still, but the RAGE. Thank goodness one of our fave nurses ever was there to calm me down. She assured me that it happens all the time. She sat with me and really just helped me not get escorted out for kicking the shit out of the other nurse that night.
I told you, lots of swears. I'm sorry but this night and what happened literally haunts my nightmares. Thinking that everything we just went through, the literal HELL that was the CCU, and now because someone screwed up something so simple - it all could have been for nothing, and the worst part was, he'd need another surgery, another intubation, more sedation.... it was honestly the worst case scenario now that we were past the surgery and clear of infection.
Anyway, Matt was at RMH because he went back to sleep… SOMEHOW before all of this NG drama happened, when he left an hour earlier he knew I was in a terrible place and he called my parents who graciously got up and drove an hour+ after midnight to be with me… by the time I caught my breath, I called my mama and BLESSSSSS them - they were in the SickKids parking lot. So after it all happened my parents were there 30 seconds later, not even knowing the shit that just went down.
Talk about good timing eh.
(btw, not many people know that story, and it was therapeutic af to write all of that out and get it into the open. Cause Lord, it has been weighing on my soul keeping some of these experiences in. Even though I can now laugh at it… these memories haunt me, daily. Here's to hoping releasing them causes some peace).
Halloween… in the morning (after I spoke to Adam's surgeon who assured me everything was fine, thank Godddd!!!) ….we dressed Adam up as a lil sushi.
My parents and brother took us for all you can east sushi before Adam's surgery and we probably ate thousands of dollars worth of food lol, so for some reason I decided to dress my kid as a sushi for halloween. Don't ask - I don't know why lmao. But I literally hand sewed on felt in the shape of salmon and added a lil wasabi, and Adam was having none of it.
The first day of this kid's life tube free, he was wearing a hand sewed sushi costume for Halloween. Not a super hero. Not a doctor. A sushi. Lol. We're not even Japanese ...we just really like eating sushi.
He was super cute though!!!
This pic is actually really hard for us to look at. Most of the time, actually ALL of our time on 5B Adam ONLY had a foot monitor (standard for every patient) attached to him. So to see him with those ...I don't even know what to call them, ports? needles? dangly poke things.... and even worse is seeing him STILL so drugged up on hard narcotics (he was being weened off of morphine and things I can't even begin to guess how to spell) ....I see it in his eyes, he wasn't fully back to himself yet. It breaks my heart. It really is so hard for me to share these images).
But yeah, what I'm saying, is that you can make the best of being there. The nurses dress up, the atrium has activities, Child Life comes by with treats and gifts - they really do make every single event or holiday memorable (hah! was it ever!!!) ... whether you decide to participate or not.
…..hey, do you think there's a Bravery Bead for that?
Kayla did a thorough job of explaining the purpose of Bravery Beads, so I will dive right into my experience. As I’ve mentioned, both my boys were in critical condition for the first six weeks of their lives. I remember a nurse starting a necklace for Theo and hanging it by his bedside. At the time I probably thought it was a sweet gesture but really didn’t think any more of it. I was in such a fog and didn’t take in the intention behind collecting beads.
The second time around, with Christian, I was eager to acquire the correct amount of daily beads. I wanted his necklace to be an accurate reflection of my family’s experience. This was difficult because Christian’s case became more and more complex and my interest in collecting Bravery Beads dissipated.
With that being said, I do recall some high moments when the boys crossed certain milestones. The most prominent for me was when my boys received the extubation bead. My boys were intubated for very long periods of time, so in my eyes this bead was like a gold medal. I even remember getting that specific bead and hanging it on the necklace - it was such a sign of relief for me and my husband.
Based on my two-time experience, I’ve seen other parents have different relationships with Bravery Beads. Some parents collect as many as possible and others are less interested. Some NICU parents have expressed that collecting beads, even after their child’s hospital stay, was therapeutic and a way to for the family to continue to reflect on their experience. For me, I’m content with necklaces that don’t represent every single poke or prod. The idea of Bravery Beads is to show the child’s growth, so I’m okay with necklaces that don’t explicitly outline every milestone.
Something that is important to remember is that these beads are not a competition. Pain is pain, trauma is trauma, suffering is suffering - the more we stop comparing our journey to others, the more we recognize and validate our own struggles. Bravery Beads are what you make of them, but at the end of the day it doesn’t matter who has the most beads and who has the least. We must focus on empathy and give one another credit for the individual journeys we are all on.
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