Location: Toronto

Health status: stable

Busy few days - Dana and family came down for the weekend. Rosie made a lovely “About Me” board for Maeve. 

All of Maeve’s chest hardware has been removed successfully and her hand IVs came off. She’s thrilled to have her hands free again! She’s already tried ripping out her oxygen prongs forcing the nurse to put socks on her hands  

Dana loves watching her scar heal. What started off as a flappy foldover of skin has now slowly wiggled its way into a smooth line. The incisions from her chest drains look like mini belly buttons which Rosie took one look at and said, “Ew”. 

The doctors are still puzzled about what is causing her fluctuating fevers and vomiting. Maybe a morphine withdrawal side effect, some infection they haven’t found or just plain old teething. I have a feeling it’s teething 🤞🏼

I had a long meeting with a nurse in hopes of replacing Maeve’s nasal feeding tube with a G-tube that goes straight into her stomach. Everyone was in agreement life would be much easier with a G-tube. Unfortunately, Maeve’s new pacemaker perfectly covers her stomach making it impossible to do a G-tube 🤦🏻‍♀️

We will have to fatten her up before space can be made. 

Personal highlights this week for me include lots of stress shopping (did you know Ellen Degeneres has a shoe line!?), seeing Black Panther and, in the next hour, Avengers Infinity War! 

Location: Toronto

Health status: stable

Of course, minutes after I publish the last exuberant update, Maeve’s blood pressure drops and the doctors decide they need to re-intubate 😣

The doctor walks me through the risks again including cardiac arrest as the room starts filling up. I get shuffled into the waiting room. 

Not even 2 minutes pass and the doctor walks in. 

Doctor: I changed my mind. She responded really well to the epinephrine. I’ve gotten permission to keep her on a low dose all night and hopefully that’ll keep her pressures stable. You can come back in. 

Wednesday and Thursday passed beautifully. Her IV rack is getting lighter with more meds being transferred to oral. They took out her femoral line because she kept exploding poop over it. Her chest drains and temporary pacemaker wires are gone. 

Two hand IVs and neck line to go!!!

Location: Toronto

Health status: stable

Monday: EXTUBATED! And we snuck in a long snuggle  

Tuesday: A big day was planned with more lines getting removed and meds weaned. Alas, none of the above happened. Maeve’s heart rate jumped up unexpectedly. Tests were hurriedly done over the next hour and everything came back fine. She spiked a fever during it all so they suspect it may be that.

Location: Toronto 

Health status: more alert and stable

Quiet weekend. Still no extubation - hopefully tomorrow. A mixture of swollen throat and a slowly healing lung slowed down plans. 

Other than that, Maeve is healing steadily. 

Location: Toronto

Health status: stable

A beautifully quiet day with Maeve. As the muscle relaxants wore off she became more awake and active. Apparently she didn’t sleep all Friday night. Just looked around with her big eyes. They’re going to up her sedation so she gets some rest  

Nothing major to report. They hope to take out her breathing tube Sunday. The bottom part of her left lung collapsed slightly so they want to wait and take it slow with Maeve. Don’t worry these things happen and is common. First time Maeve was extubated after first open heart surgery when she was a few days old both lungs collapsed so good to take it slooooowww and cautious.  

We had a long chat with one of the surgeons. He regaled us with some of his more comical stories and his opinions on hospital TV dramas like Greys Anatomy, of which he is a big fan.

Opinion 1: Surgeons don’t lunch together, like ever. In the real world, it’s pretty much impossible to all collect together mid-day for a gossip filled lunch.

Opinion 2: Where are the nurses and technicians? IRL, doctors don’t have time to run blood work to the labs or sit by the MRI machines. In the TV shows, doctors appear to do everything!

Opinion 3: TV show hospitals extubate breathing tubes way to fast. The patients come straight out of surgery with no breathing tube. IMPOSSIBLE!