Location: Toronto

Health status: stable

We almost had an uneventful day. It’s all settled down now. 

We received a call in the middle of the night. Maeve’s pupils were uneven and they were taking her to get a CT scan. They suspected either a stroke, brain bleed or seizures. 

Two hours later, they called back with CT results. No to stroke and bleeding. 

Later in the day Maeve got an EEG test and seizures were ruled out. 

Other than that, her heart has been steady. They took her off muscle relaxants so she can move and open her eyes. Still super doped up so she can’t really focus. She does wiggle WAY more when she hears Dana’s voice over mine 🤭

Thank you for all your encouraging messages yesterday. They were beautiful to read - we felt so loved. 

Maeve is in surgery.

8:00 am. No updates during the procedure so if you don’t see anything until after 10pm, that’s a good sign. (Theresa)

2:25pm. Got the call early and dreaded picking up the phone. Maeve made it! She’s through the hardest part! Heart restarted and pressures are good for her. Still a ways to go, not to mention recovery, before they wheel Maeve out but dammit all I am going to celebrate the small victories. (Dana)

5:35pm. She’s out of surgery!!!!!!!!!!!!!!!!!!!!!! Everyone is amazed at how smoothly it went. We both saw the relief from the surgeon. They had planned for a much longer day. They even upgraded her pacemaker battery and closed her chest. Last time her heart was so swollen they had to leave her chest open for a week. This is dangerous with the risk of infection real.

Dana and I are relieved beyond words. We’re anxiously waiting to see her. Hopefully in another 30-40 mins and then I’m going to bawl my eyes out. 

The next few days will be focussed on seeing how her heart function deals with this sudden burst of normal blood flow. The surgeon was very firm on warning us we’re not out of trouble yet. Still.... I am CELEBRATING tonight! Which means basically climbing into Maeve’s crib with her. (Theresa)

(Written by Dana)

Location: Toronto

Health status: stable

Surgery: Wednesday morning

We received good news today. Maeve’s procedure to assess her heart pressure levels went smoothly. The procedure took about 2 hours. While the surgery was going on we walked around, had some Japanese cheese tart, phõ and did groceries. Stress breeds odd cravings…..

So the good news! They plan to replace only one valve (the one they did last time) and lightly repair a second valve called the tricuspid. Her aorta and pulmonary look like they’ll recover once the leakage in her other valves go away. This is a huge change from Friday where they said all four valves were beyond repair. We went from four valves needing repair to two and now one to be repaired. Still incredibly serious and risky but familiar territory at least.

Her heart’s ‘squeeze’ function looks ok but they’ll examine that more after her surgery tomorrow. Again much better than yesterday. This means her heart is more likely to restart and keep going after being stopped for surgery.

The cardiovascular surgeon walked us through the risks of tomorrow’s heart surgery. The percentages are terrifyingly high. Like I’d rather flip a coin or play Russian roulette. It’ll be a long day tomorrow - anywhere between 10-12+ hours.

We plan to catch a movie, get some nails done, walk…. that’ll take us through at least 3 of the 10 hours ​😒​

We’re handling the stress ok. Theresa had a good cry last night after slathering a hair treatment on herself (ahem - and maybe me). I bought an iPad for “the children” (Theresa made sure it was in rose-gold thinking it’ll force me to keep my word). I find deep breathing and reminding ourselves of all the things we are grateful for helps a lot when the pressure gets too much. Pizza and beer also help.

Hold onto your seats and cross your fingers folks. Tomorrow is going to be intense.

#mightymaeve

Location: Toronto

Health status: small scare in the morning but stabilized.

Surgery: pushed to Tuesday and then pushed to Wednesday.

Dana woke up early and ran over to catch the doctors‘ rounds where they update what happened during shift and what the plan is moving forward.

The doctors wanted a more in-depth echo of her heart by inserting the cam through her mouth. They discovered what looks like vegetation growing on her artificial valve.

She skyrocketed a fever mid-morning and went grey. Luckily Dana was sitting nearby and caught it. He quickly escalated it to the nurses. Maeve’s meds were increased and put back on muscle relaxants. She stabilized within an hour.

Tomorrow’s plan is to snake a catheter into her and check pressure level in her heart chambers. This data will help inform them of what actions they can prepare for when they do surgery.

They suspect they’ll need to replace two valves in total. Her artificial one and the tricuspid valve.

Everyone is preparing us for the high possibility that after this surgery, Maeve will be need to be put on the heart transplant list. What that will entail is still unknown.