Tues. June 19 - Rejection

Posted by Theresa Nguyen on

Location: Ottawa

Health status: same

Whelp, the last 2ish weeks of waiting has passed and our limbo state has ended. Our hospital decided that they don’t want to risk doing Maeve’s Gtube surgery. 

Yupppppppp - ya heard. After multiple consultations with different surgeons/anesthesiologists  and getting the thumbs up from many people, we got confirmation yesterday that the head of cardiovascular surgery thinks the surgery is too risky. Maeve’s pacemaker wires sit right along the place where a Gtube could be placed. No one feels comfortable intervening should an emergency arise during surgery. 


Dana and I are a bit stunned. There was no alternative course suggested. I’m waiting for my rage and bitterness to subside before I recall the doctors and “pitch” the need for a Gtube again. I suspect another trip to Toronto will be their suggestion. Aggggghhhhh. 

Other than that news, Maeve has been doing superb. When the weather is good, we’re ouutside walking a bunch which keeps her happy. She’s getting incredibly strong with each passing day. No hints of crawling or bum scootching. I suspect with everyone catering to her every need, she’s never clued into the concept of why she would need to exert herself to get stuff. When I try to encourage her to move, she just smirks at me with such certainty, “I know you’re gonna get that for me, b*!\?”

Or maybe I’ve been listening to too much Tiffany Haddish and projecting my 15 year old Blacknese wishes upon Maeve....

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Wed. June 6

Posted by Theresa Nguyen on

Location: home sweet home

Health status: blissed out

Maeve is officially discharged from the hospital!!!!!!! Such a long day. I’ll keep this short and go make a strong mojito. 

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Mon. June 3

Posted by Theresa Nguyen on

Location: Ottawa

Health status: stable


Today was one of those days where the dip was real. Where I really felt the weight of Maeve's hospitalization on my shoulders and couldn't pull myself straight.

We were allowed to take Maeve home for most of the weekend. Dana, bless his generous heart, thought we could keep Maeve overnight and handle her stringent feeding schedule. 48 hours with Maeve broke me and I felt so much shame.

The first night I took watch and didn't sleep a wink. Maeve actually slept the entire night - it was just me and my brain whirling incessantly, jolting awake at the slightest sound. The next night, Dana took over and I did morning shift. Still, I found myself after 8 hours of sleep, jostled awake at 5am and begging Maeve to, "Shut up!!!!!!!!" A few minutes later, she barfed all over me.

At work, we talk so much about the importance of cultivating resilience and I used to walk around like a rooster so embedded in my belief that I had it figured out. Bull! My resilience is a piece of shit that hides at the smallest provocation. I hit my knee while trying to bend carrying a sleeping baby to get my phone off the night table. I'm sure I woke my neighbours with my scream of fury and wails.

When I wheeled Maeve back into the hospital this morning, I was blurry eyed and shocked I hadn't yet experienced a complete meltdown while trying to park my huge truck into the ONLY minuscule parking spot left, hustle out a sleeping baby (who! I might add was in the middle of being fed through her feeding pump which adds six extra steps to getting her out of the truck). Oh, and it was pouring rain and I forgot to put a sweater on Maeve. 

I had only an ounce of patience left for the hospital's slow, bureaucratic, messy policies. First we couldn't go home despite there being nothing planned for Maeve that day. Then we could go home. Then we couldn't. Then all of Maeve's doctors wanted to meet up because there were too many cooks in the kitchen and everyone was giving us different instructions. Then that meeting was cancelled. Then we could go but had to wait for a doctor to put the orders in. Then that doctor was switched because another doctor thought she would be better to handle Maeve's case because she had been with us for the whole time (which I agreed with but I wish that had been decided 2 weeks ago). 

They took out Maeve's central IV line yesterday after keeping it in for 2 extra days. Today, they told me they needed to put another IV line in for a test. They were going to need to fast her for 8 hours and wanted to give her fluids as a safety precaution. WTFFFFFF!!!! Why did you take out the other IV then in the first place!???????

Dana just texted (it's 10pm) and said that after two attempts they couldn't get an IV into a screaming Maeve. He politely told everyone to fuck off and that he was not going to allow anymore pokes. 

Sorry for the rant but today I reached one of my peaks. I try my best to stay positive and strong but this post is a glimpse into what our day to day life is like with Maeve's hospitalization. Everyone that works with her is really lovely but the system is still a ways from being patient focused. Doctors rotate shits so despite getting the okay from one doctor - the next scheduled doctor may have a different opinion. Nurses try their best to provide the best care but they have to wait for doctor orders and minimal resources. They also get limited emotional and mental support so many maintain a certain distance so that they don't get too emotionally invested in their patient.

It was the same in the Toronto hospital and while I understand how hard it is to change people and systems.... today I felt the hammer of bureaucracy and today, I wasn't strong enough to take the hit and it really, really, really friggen sucked.

Fingers crossed tomorrow is better. The end is far from close. Multiple tests tomorrow to confirm if we can get discharged. No breaks to go home tomorrow which means I'll be stuck for 12+ hours in the hospital (at least in Toronto the hospital was downtown and had places to keep me/Maeve entertained). Maybe Wednesday Maeve can come home but we still have no idea when the next surgery will be. "Sometime in June".

I am frustrated beyond hell right now. I'm tired of watching my baby projectile vomit throughout the day. I'm tired of having to shove a feeding tube up her nose while she screams in fear. I'm tired of the inquires or shocked expressions when people see Maeve. I'm tired of driving to the hospital 4 times a day. I'm just so so so so tired of it all.

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Thurs. May 31

Posted by Theresa Nguyen on

Location: Ottawa

Health status: maybe a dip?

No surgery. 

After fasting for 6+ hours and enduring polarizing responses of: We’re doing it! We’re not doing it. We’re doing it! We’re not doing it. We received a firm: We’re not doing it. The reason, ‘Whelp, the antibiotics are due to end in 2 days and we would feel so silly if something were to happen that could’ve been prevented had we just waited’.

FACEPALMMMMM. You couldn’t have just decided that at the beginning of the day?!!!!

It was a mentally exhausting day. With a bit of fortune, we were able to bring Maeve home for a few hours in the evening.

Today, we got more bad news. Maeve’s morning echo shows high lung pressures. Our original plan of being discharged tomorrow hangs in the air. Aaaaggggghhhhhh....

Here’s a funny story that had me and Dana in stitches throughout the day. Two of Maeve’s nurses were giving meds. Both were older. One in particular was extremely positive, chipper and thought everything was just GREAT! 

Nurse 1: Sorry that I’m taking so long. I‘m just anal when it comes to cleaning. 

Chipper Nurse: Oh, that’s just FINE!!!! I LOVE ANAL!!!

(room goes silence)

Nurse 1 pretends she didn’t hear anything and starts a new conversation. 

I turn away and see Dana’s shoulders shaking as he tries to hide his beet red face into his laptop. 


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2 weeks after coming home

Posted by Theresa Nguyen on

Location: Ottawa

Health status: stable

Over the last 2 weeks, we’ve settled into a wonderful routine. Maeve is doing really well (minus the spontaneous vomiting that no one can figure out). 

We’ve been lucky to get daily passes to bring Maeve home. Our routine looks something like this...

6am: Dana bikes over to be there when Maeve wakes up. Most of the time she’s still asleep but there’s been a odd occasion where he’ll find her in a nurse’s arms watching the bustle of the nurses station.

9am: I wander in after dropping off the older girls at school. I wait around for any specialist/doctors that need to chat. I finally was able to snag the window corner of our room and set up a sweet play area.

3:30pm: Sweet, sweet freedom. If all the feeds, med delivery and antibiotic drips are finished, I get to take Maeve home for a few hours (and to eat my supper - thank you Instant Pot!)

Maeve enjoys her sisters and sits out in the front yard to get cooed over by passing neighbours. She ❤️ the attention and action.

9pm: Depending on which parent consumed the least wine, usually me, Maeve goes back to the hospital for her antibiotics. If I’m lucky, she’ll fall asleep by 10pm after all the pokes and vitals are finished.

Rinse and repeat.

Today may be different, there’s a rumor circulating that she may get her GTube surgery THIS afternoon. Apparently there was a huge string of cancellations and everyone’s prepping Maeve in case she can get squeezed in. 

To be continued!!!!! 

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