Category: Survival

Holidays at the Hospital

10/31/2020

*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.

SO HALLOWEEN.

(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?

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HOW TO SURVIVE

10/22/2020

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Tips & Tricks for surviving a stay at the hospital
(from short term visits to long term living)

It’s not easy. I’ll start with that. Every day you will see something that upsets you, and something that is going to bury itself deep within your memory for a rainy day. But, you’ll also see amazing things. You’ll see people volunteering, and therapy dogs and therapy clowns (though thankfully I didn’t run into any often, I do not like clowns at all! In fact I made sure the nurses knew to keep them away from us!)… but you do see some pretty amazing things sometimes. I’m sure the people who saw Adam and I on our first Starbucks date cried along with us in the line up. However, you also see a lot of pain. You see children enduring far worse than you could ever imagine, walking around with IV poles and hospital gowns. You see a lot of crying parents, all over, especially in the fourth floor of the underground parking - I’ll get to that later. I’ll get to places to go to, and places to avoid. Let’s start with the good…

NICU

In the NICU you’ll spend your time in three places - your baby’s bedside, the pumping room, and the waiting room.

The bedside is where you’ll be most of your time. Two people are allowed bedside at a time, so if you have visitors only one can be there with you. The chairs are not comfortable, especially if you just had a baby (newsflash, 50% of the parent’s in there - all the females - have just birthed a baby, and it is NOT a comfortable experience). A blow up ring will seriously help you sit as long as you will be, don’t be embarrassed, it’s a buttsaver.

When you’re doing skin-to-skin or breast feeding (if you’re lucky enough to do so) there is a divider that gets wheeled over to you that shields you from the view of everyone around you. This is why we need to build a new SickKids and a new NICU!!! The space is super small, there are lines on the floor barely bigger than your baby’s crib and you cannot cross those lines. It’s not comfortable, it’s not private, it’s not right. I feel like you barely realise it because there’s just so much going on all around you, but it is uncomfortable, and something needs to be done to remedy it.

Mind your own business. I say this in the nicest way possible. Do not borrow trouble, it’s the only way you’ll make it out emotionally and mentally in one piece. We were next to babies that had wires all over their bodies, babies that were having seizures constantly coding, a baby that had it’s insides hanging from a bag using gravity to drop them back inside the body (sound familiar? Christian was past this stage at the point we were there). You’ve just got to focus on your baby, your doctors, and your rectangle on the floor. Jessica and I didn’t talk once when we were beside each other. Not to say that people don’t, but you’re not there to make friends - don’t expect it.

In the NICU when the doctors talk to other families, you have to wear 90’s radio headphones that play static classic music to drown out the noise of the room, and provide the family speaking with the doctor privacy. It’s inconvenient. They need to build a new NICU!

You’ll spend a lot of time in the Pumping Rooms. There’s a tv and a couch. You need to bring your pump or use the hospital grade ones. These rooms provide you with privacy and a 20+ min break to watch HGTV or the news or whatever nonsense you need on while you pump. There is usually a line of mamas sitting and waiting, sometimes it takes forever. You will meet people in this line and sometimes jokes will be cracked, tears will be shed - you’ll realize we’re all in this boat together. Sometimes though, people can be overly friendly and ask you “why you’re there” or “what your baby has” …some people are really upfront and will straight up say “what’s wrong with your baby?” …to which I wanted to reply “none of your damn business” ….so be prepared for all types of people, some who are adjusted to being there and some who are dreading every second.

Also, here’s a TIP: write “OCCUPIED” on the back of your NICU ID tag, buy a lanyard, and hang it off of the door handle so you don’t have to yell “someone’s in here!!!” every 2 minutes when someone bangs on the door or tries to open it without locking it. Always. lock. the. door.

The NICU wait room is drab, and horrible. It’s cramped and constantly full of worried and upset people. You must use the phone to call in and then register before visiting. Like the pumping line, people get to talking, often because they are waiting for so long, so if you don’t want to talk to people - don’t look at them. Some people need their space. Some people need people. It’s hard to figure out who is who, or who you are even at times. You’ll be able to tell off the bat who the ones are that have been there for a while, or even worse, there before.

When you’re in the NICU and you have the parent badge, you can go to the RONALD MCDONALD HOUSE ROOM on the 4th floor. You have full access, and your guests do as well as long as they are with you. USE IT. Go up there and have a coffee or a snack. Do your laundry, take a shower. Watch some of a sports game or a sitcom. RMHC is there for you. They are amazing!!!! I donated and replaced more than enough brand new bath towels to fill their entire closet - so you can feel comfortable taking a hot shower. Ask them for toiletries if you need some, they have many. They are there for you!

THE RONALD MCDONALD HOUSE

If you’re fortunate enough to stay at RMH then you’ll be a 7 minute walk from SickKids. They have coffee, prepackaged lunches and snacks, and the most amazing staff. They also have events and things like manicures and pedicures, and massages (I was never there for them as they were often done in the middle of the day when I was at SK, but they’re available nonetheless). RMH is a literal lifesaver. You come back from the hospital at midnight to sweet volunteers that have literally just baked fresh cookies. FRESH COOKIES out of the oven at midnight… after a day at the hospital, nothing in the world feels better than freshly baked cookies.

When we found out that we were going to be staying longer than a few weeks, a family member brought us a care package for RMH specifically. It included a new bath mat, shower curtain, toiletry caddy, cups, and coffee mugs. This was amazing. It was little things that made it feel more like home for us - which was a double ended sword to be honest. Though it made us more comfortable, it also made it real. It made us realize how long we were going to be there. We also brought in our ROKU (or you could bring an AppleTV) and connect to the wifi to stream Netflix or Disney+ …every night when we got home at midnight, we would watch an episode of The Office to just decompress, relax, and distract us before bed. Comedic relief was so dang necessary.

LIVING IN THE HOSPITAL

When you are at the hospital every day, it gets tough. You have good days and you have bad days. My body and mind went into autopilot. I’d walk in through the same entry every day, order my Starbucks, go straight to Adam’s room, and do the same thing the next day. Listen to me here… you need to eat. You’ve got to. I know you don’t want to leave the room, I know you’re not hungry, but you have to take care of yourself. Some of my son’s nurses would promise me that they would literally sit with him while I went to grab food (even though Adam was perfectly stable 99% of the time), it’s hard to leave them. Subway and Timmies get old real quick, go to the cafeteria - it’s really not that bad, I swear I lived off of their salad bar when I did eat.

There’s a Shoppers at the University Ave entrance. Guess what, they have candy and chocolate there. They also have pads, tylenol, extra baby supplies - you don’t need to buy diapers because those are supplied (as are pacifiers) …but it’s great that they have a Shoppers in the building. There’s a hallway between the two wings that has vendors and a convenience store, you can also get candy there - other than that we never really went in those stores. There’s the Health store as well, and this is where you can get any medical supplies or extra pump parts, g-tube or pump parts as well (also something you don’t need to supply as long as you’re an in-patient).

Depending on your child’s condition you may be able to go for walks, do not be afraid to ask this. We were literally tethered to the wall and were able to hook up to a mobile suction and go for walks. As we got comfortable we were able to go into the hall by ourselves (I’d never go alone, always with my husband or a nurse). We were even able to go upstairs to the rooftop patio with a nurse. The rooftop patio is amazing. It was the first time Adam felt the summer breeze, and got to breathe fresh air, we are so thankful for those opportunities… we found out about it through a volunteer, so be sure to ask your nurses!

There is also Marnie’s Lounge - it’s like a little games/ activities room for patients and family members. It’s usually where events are held or where “celebs” and athletes do their interviews/ meetings.

Our favourite place to go was in the hallways between the Atrium and the Black Wing. It’s literally all windows, and the best place to sit and chat with a friend when they come to visit.

The best place to go and cry, is the 4th floor parking lot, known as the Crying Lot. There was a SickKids VS commercial and it showed a Mama in a dark corner of the underground parking, absolutely losing her shit in her car, and I assure you it was 100% accurate. It’s dark, it’s cold, and it’s empty. No one is around to hear you scream with your doors closed. You can cry as loud as you need to, completely undisturbed. If you know, you know. I hope you never get to that point.

DO NOT go exploring the Black Wing. Honestly, don’t. It’s mostly offices and old hospital rooms - it’s creepy and old. Definitely do NOT go exploring there at night. We were told by many nurses, since we were always there so late, to never go walking through the Black Wing alone, especially after hours. Downtown is a weird place sometimes, and sometimes people get in and do drugs in the bathrooms or hallways. Security is usually pretty good, but you never know, and it seems like it’s always dimly lit, even in the middle of the day. No thanks.

Also, STAY ON YOUR FLOOR or the RMHC Lounge on the 4th floor, or the Atrium. Don’t go exploring areas that you have no business in. Seriously. The second floor is the ICU and the surgery floor. You do NOT want to be there, ever. It’s self-explanatory, you’ll see, hear, and witness things you don’t want to. The 8th floor, unless you’re admitted there, is another one you shouldn’t go to. I had friends who were on the burn unit up there, and I recommended they walked straight to the elevator, head down, and go to any other floor but the 2nd. They didn’t listen - they walked around, and ended up seeing families and patients that were very ill and it was very upsetting. It is a children’s hospital after all, and most things you witness are heartbreaking. Where we were on the 5th floor was right across from the Neurology/ Trauma unit, and often I’d be in the hall and see children who have had literal brain surgery sitting by the window with a parent. These sweet children have been through so damn much, and it’s so so heartbreaking. You will definitely see children hooked up to IVs or going through different treatments. I’d often break down or have panic attacks while I was out of our room.

CODES

You will experience these. No matter where you are in the hospital, or when, you’ll hear it. Even in the parking garage. The sound of that beep will forever haunt me for the rest of my life, even though Adam never coded. Every time you hear it, even when you’re in front of your child, you tense up. For me it was like this wave of anxiety, I’d hold my breath until it was announced. Even afterwards, it was an immediate “oh my God!” and these empathetic feelings of anxiety, panic, stress, and pain for whomever is there, at the code to experience it. “Those poor parents”, “OMG I can’t even imagine”, “I don’t even know what I would do”, “I hope they're ok”…. your thoughts just take off and your body just goes into this terrible state of anxiety. I hope to God you don’t feel what I felt during codes. I began to have panic attacks just thinking about them. I think about them even though we’re at home now. I can’t stand the beeps at Subway, or the coffee maker, the fire alarm. Even a page over the PA system at work sets me into an anxiety/ panic attack.

The NICU and the ICU have their own code system that is not broadcast over the entire hospital. It is internal to the specific unit and they have their own specialized teams to deal with it. When we were in the ICU we were exposed to a few of them next door in the Cardiac ICU. One day I’ll share the story about how I met some amazing people over a code in the NICU.

LONG-TERM STAY NICE-TO-HAVES

When living at a hospital, most things are taken care of for your baby. Once out of the NICU you can bring clothes (shoes are honestly a waste because of the foot monitor). I recommend you bring your own swaddles, and some favourite stuffed animals as well. Because we were in for a long-term stay, we also brought Adam’s bathtub, crib side fish tank (I donated enough for the entire hospital - so you don’t have to worry about that one!), some books, when he was a bit older we brought his Finding Nemo bouncer. The Occupational Therapists brought us a gym mat that we’d put a sheet over so we could do tummy time, but I brought our own play mat for him and some developmentally appropriate toys.

We were in the observation room for the majority of our stay and we absolutely hated the sterile white hospital lights, so we brought our own lamp. You’re really not supposed to have outside electronics, but who the hell was going to tell us no - we lived there for almost a year - all day, every day. We also brought a second ROKU and universal remote, so I was able to binge watch Netflix throughout the day beside Adam. I told ya, I literally lived there right beside him, all day every day - having Netflix was amazing. (Ask me about some of the things I watched LOL man do I have stories about that hahah!)

“HOW CAN WE HELP YOU?”
A guide for family and friends

If you’re lucky to have a big Home Team, then you’ll likely have family and friends wanting to visit. When they come, ask them kindly to leave the gifts for your sweet babe at home and give them when you’re home yourselves. I find that people often say to me now “I have a friend who has just been admitted and will be there a few weeks, what did you find was the most useful?” …the best thing you can do for your friends or family, is be there for them. Be there to talk to them, more importantly to listen to them. You can’t and you don’t understand what they are going through, so don’t pretend to. I needed people to side with me. To tell me that it was going to be alright, but that yeah it was unfair and it totally sucked we were there at all. I did not want pity or sympathy, but I also didn’t want false hope or annoying af positivity. Because it is shitty, it is literal hell, and it sucks more than anyone will ever know. Don’t tell me things happen for a reason, or we’ll come out stronger in the end… No. This sucks ass right now and it’s going to fucking suck tomorrow and the next day too. Yeah, remind me it’ll be a memory eventually, but right now it’s shit. Acknowledge that, validate it, and be there for them. Period.

As for gifts and physical things… Starbucks gift cards! Starbucks is a treat for a lot of people. When I lived at SK, I had a Starbucks latte every damn morning. It became part of my routine. Sometimes I’d even have one in the afternoon if it was a rougher day. Now that can get pretty expensive after the first, uh, day. So having an unlimited Starbucks card was AH-MAY-ZING. My husband never ever complained about the money, and I’m talking HUNDREDS of dollars I spent on Starbucks over the 8 months I lived in that hospital. He told me, “if that’s what you need to start your day and make it through - you do what you’ve got to do.” and I will forever appreciate that more than he’ll ever know. If you can take that expense away for someone, then do it. Especially someone who loves lattes and needs coffee to function. Starbucks cards are refillable online. If you have a family member, friend, or coworker even that is living at SickKids, pitch together with some friends or team members and everyone put a little bit to reload their card when you see it’s getting low. I for one never took advantage of it, it’s not like you’re “buying this time” when you meet up with a friend - anytime I was with someone they always bought my drink anyway. This was a literal LIFE SAVER.

Also, Skip The Dishes. Whether it’s a gift card, or even just picking up the tab for a friend & telling them that dinner is outside in a black Hyundai Elantra. (Honestly, it’s not as sketchy as it sounds!) There are some great restaurants downtown, and delicious options that are SO much better than the cafe or Subway, again. We discovered it after Adam’s surgery and I’m actually so glad it was the tail end of our stay because we a) would have spent a ton of money, and b) probably would have gained weight instead of lose it.

As for in-hospital and around the area gift cards, Subway, Tim Hortons, Swiss Chalet are all close by. There’s a Boston Pizza a block or so away… but if they don’t leave often (as we didn’t) then it’s best to stick with Subway, Starbucks, or Timmies. It’s about taking away one less thing for them to worry about.

Your time there will come and go, it’s going to be long no matter what and feel like an eternity with no end, even just for a day or a couple of hours. No one wants to be there, and I often say that it’s the best place you’d never want to be. Being prepared as much as possible, knowing where to go, what’s available, is such a weight off of any parent’s shoulders. If you or someone you know is in for a stay at SickKids, please feel free to reach out for more tips and ideas.

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Holidays at the Hospital

HOW TO SURVIVE

Tips & Tricks for surviving a stay at the hospital
(from short term visits to long term living)

“HOW CAN WE HELP YOU?”
A guide for family and friends

Archives

Categories

Holidays at the Hospital

HOW TO SURVIVE

Tips & Tricks for surviving a stay at the hospital(from short term visits to long term living)

​“HOW CAN WE HELP YOU?”A guide for family and friends

Archives

Categories

Tips & Tricks for surviving a stay at the hospital
(from short term visits to long term living)

“HOW CAN WE HELP YOU?”
A guide for family and friends