Edmonton Trip #2 (Draft)

Edmonton Trip #2 – Diagnostic Cardiac Catheterization (#2) & Band Tightening

The main reason why we were being sent back to Edmonton was because our Cardiologist who preformed Mckenna’s catheter didn’t get the entire press results that Edmonton required to make the next decision; so Edmonton wanted us to come there to have their doctors’ preform another catheter to get the exact numbers they wanted, and to do certain tests to Mckenna to see how her lungs reacted to specific drugs.

We arrived in Edmonton on December 21st, 2016; this time around I felt super confident, knowing what to expect, the hospital, the process of being admitted into the hospital, and overall my surroundings.

Before we got the news that we would be coming back to Edmonton, I had a really hard time, at first, accepting that Mckenna and I’s first Christmas together would be spent in the hospital. As time passed and Christmas day approached, I was comforted knowing that either way, no matter where we were in the world, Mckenna and I were together for that special day, and she was safe.

Diagnostic Cardiac Catheterization #2

Mckenna was scheduled for a ‘diagnostic cardiac catheterization’ on December 23rd, 2016. One of the hardest experiences to go through is the hours before the surgery or procedure; with every procedure, Mckenna has to be “NPO”, meaning she cannot consume any food or liquids for at least hours before her surgery, and because Mckenna is not the only baby in the hospital who needs help, these procedures are never on time. There is always a window of time when the procedure should start, but it’s never close to the scheduled time.

A diagnostic cardiac catheterization takes anywhere from 3-4 hours; 3 hours for the procedure itself, and another hour at least to get Mckenna extubated, stable, moved up to the ward, and settled.

Mckenna’s second catheter went well; the doctor had an emergency to tend to after her procedure was over, so he called me and explained the results of the procedure.

He explained that unfortunately her pressures hadn’t come down enough for her to be ready for the Glenn, so he said the best thing for her would be to have her pulmonary artery (PA) band tightened, to lower the pressures in her lungs even more; her pressures in her lungs are also referred to as ‘pulmonary hypertension’.

When I received the news, I don’t remember being upset or disappointed; I remember feeling hopeful, positive, and anxious to move on with another surgery to prepare her for her big fix.

After Mckenna was brought upstairs onto the ward into the “ICE” (isolation) room, she was settled and we continued to go on with our hospital routine. She was tired from the sedations, her throat was raspy from the breathing tube, and her cheeks were extremely puffy. As always, it’s difficult as a parent to watch your child go through something you wish you could have gone through instead of them, but it was so refreshing to see she was ‘okay’ after yet another invasive procedure.

Mckenna’s First Christmas in the Hospital

Christmas morning felt weird. As my mom and I awoke and walked over to the hospital, the area around us was so quiet; everyone was in their homes with their families and friends, and there we were, walking over to a hospital to go celebrate Mckenna’s first Christmas. I think what was most hard for me to accept was that you just never imagine having to spend Christmas Day in the hospital. Christmas is supposed to be this exciting, magical, happy day, and don’t get me wrong — it was — but, it definitely was not how I envisioned our day.

The hospital was very generous with gifts for the patients families; we received a giant basket full of candy, chocolates, snacks, and chips. Later in the morning, Mckenna was visited by Santa and he brought her a giant blue Care Bear (I think it’s Sunshine Bear), a sleeper, and a TY beanie cat. I cannot wait until she’s old enough for me to explain to her that Santa brought that to her all the way in the hospital in Edmonton – he didn’t forget about her and made sure to find her.

The rest of our day was spent inside the 4 walls of Mckenna’s room; no fancy family dinners… no memories of seeing my step-son open his gifts that morning… no seeing my family or spending any time with them. Nope… It was just another day… Yes, another day with Mckenna, but just a regular day. By the middle of the day, I was so ready for Christmas to be over and done with for another year.

I told myself next Christmas Mckenna will be that much older, and will actually know what’s going on, and it’s all the more reason to make next years’ Christmas even more special.

Band Tightening

On December 28th, 2016 around 1pm, Mckenna went into the OR to have her PA band tightened. This time, her surgery only took about 2 hours. Because the band was already in place and established on the pulmonary artery, the surgeon just had to make the incision, tighten the band, and close her back up.

The first time Mckenna had her PA band surgery, she was only intubated for 24 hours, and the next day she was extubated. After her surgery was completed, the surgeon came up and spoke to me; he explained the surgery went well, but the band was very tight (in order to bring her pressures down), so he warned me that would bring down her oxygen levels, severely.

Mckenna was brought into the PICU around 5pm; she was intubated, sedated, puffy, and pale… again. For the incision this surgery, her surgeon was able to only make a small incision off her sternal incision, that makes her scar looks like a half cross; it’s actually so beautiful, and I was so happy to see she didn’t have to be ‘opened up’ so extremely. The incision he made didn’t even require stitches, just glue to keep it closed… one less thing to heal.

I was convinced Mckenna would rebound just as well as she did after her first surgery, but that was not the case this time…

Intubation

Mckenna ended up being intubated for FIVE extremely long days… She was intubated for so long because her oxygen levels (saturations) would not come up to her expected ‘baseline’ (70% oxygen in her blood). During her intubated, I came down with an extremely terrible flu, and I was so sick, I couldn’t go to visit her for 2 1/2 days.

So to sum up how hard things were for me… my baby was intubated and overall not doing “well”, because her oxygen saturations were only in the 50’s, I was puking my guts out and felt exhausted and fatigued, I was worried sick about Mckenna.

On the second day post surgery, a cardiologist from the PICU called and advised me that they were most likely going to take her back into surgery to loosen her band because her oxugen saturations just would not come up no matter what they did.

An hour later, the same cardiologist called me and said they actually didn’t want to bring her into surgery because her saturations had picked up over that past hour, and they wanted to wait it out to see how she did.

Signs!

Thankfully, Mckenna didn’t have to go back into the OR. Her saturations did climb up, and by day 4, she was ‘eating’ through her sedations, was coughing a lot (due to the breathing tube), and was overall showing signs she was ready to be extubated.

Another issue during Mckenna’s intubated was her diaphragm. It had been determined by the ICU doctors through an x-ray that her diaphragm on the right side was extremely higher than the left side. The doctor’s explained that her diaphragm may have been ‘nicked’ during surgery (a risk), and it may have been paralyzed. He explained really the only way they could determine if it was fully paralyzed was to extubated her and see what her breathing looked like; if her breathing resembled a “teeder-todder” look, it meant it was paralyzed and Mckenna would have had to go into the OR again and now have her diaphragm fixed…

At this point, I EXPLODED. I demanded the doctor’s tell me WHEN, WHY, HOW something like this could have happened… They were going inside to fix her heart, and they now paralyzed her diaphragm… I couldn’t believe what I was hearing.  My sweet girl had just been through hell and back, and now they were telling me (like how they would say “oh the sun is shining”), “Mckenna will need repair surgery to fix that”.

Luckily, after expressing how upset I was, the doctor’s investigated the issue further, and they determined this issue happened this surgery, and not her first banding surgery. Of course, they now couldn’t explain how it happened, but they assured me they would be able to fix the issue if it was paralyzed.

The hardest thing was hearing the PICU doctor say “your daughter will be extubated, and she will most likely fail”… (meaning she would more than likely have to be emergency re-intubated).

New Years Eve / Day – 2017

New years sucked – no more to say about that.

Extubated

On January 2nd, Mckenna was successfully extubated!!! She proved everyone wrong. She did amazing. She didn’t require any extra help after her breathing tube was pulled out. Being extubated in the PICU is easily one of the biggest challenges and accomplishments a child can go through there. Mckenna never had to be re-intubated, and after her breathing tube was removed, she never showed the “teeder-todder” signs that her diaphragm was in jeopardy.

-withdrawal days upstairs – those struggles

-arguing with doc’s / nurses

-talk about how hard being on the ward is

On Thursday, first, we were told a flight was able to come and pick up Mckenna and bring her back to Winnipeg, but then a massive snow storm hit Winnipeg and the pilot, team, and the plane were unable to fly due to the weather conditions.

The next day, we were told Mckenna was possibly able to be taken on a flight returning back to Winnipeg that evening, but later we found out the pilot’s time had ‘timed out’ once the team and the plane had arrived in Edmonton. Big let down!

Finally, on Saturday Mckenna had a plane fly from Winnipeg to Edmonton to pick her up! The weather had calmed down, and it was a brand new ‘fresh’ flight team that would be caring for her while on the plane.

Around 6pm, a transport nurse and flight EMS worker arrived into our room first, then two ambulance EMS with a stretcher arrived shortly after. They attached Mckenna’s car seat to this giant stretcher  and I got her settled into her seat and clicked in. I said my goodbye’s and we quickly followed by saying our goodbye’s to the nurses and another heart mom that I had met in the room, as I knew if I stayed any longer what was happening would about to sink in, and I could feel myself getting emotional.

Mckenna was transported back to Winnipeg  on the medical jet on January , 2017. My mom and I flew home via West Jet later that evening.

We arrived safely in Manitoba around 11pm that following night, and Mckenna arrived safely around 10pm.

Continue reading my blog about our return to Winnipeg in my next blog post titled ‘Back to Winnipeg’.

From my heart to yours,

  • D ❤

Edmonton Trip #3 (Draft)

January , 2017

After finding out that Mckenna was approved to be medically flown to Edmonton’s Stollery Children’s Hospital, J and I left Manitoba around 7pm that night. We headed West in hopes our drive wouldn’t give us any issues. We hoped our drive was going to be smooth, but it was the least thing from that. 2 hours in, we incurred heavy fog, light snow, and the worst… icy roads. We took turns driving and we were determined to drive straight through to Edmonton with no stops, but the weather wouldn’t allow us to do that.

It was approaching 2 in the morning, and we had been driving for about 7 hours and we were not even half way there. We had to slow down to 50 km’s an hour to drive safely on the ice.

We decided to stop at a hotel in Regina for a quick sleep and breaking, then we would head out early in the morning. We slept for 5 hours and headed back out in the morning around 9am. We drove straight until we got to Edmonton; we arrived in Edmonton around 6pm, with a total of a 17 hour drive…

Edmonton

The first thing we did was go and see Mckenna in the hospital. We called the Stollery Hospital around 1am, and were so happy to hear she had arrived safely with the Transport Team. Doctors were concerned how she would do in the flight; due to the altitudes in the air, they were worried with her oxygen already being low, if it would drop even more. They warned me she may have had to be intubated for the flight so they were able to control her oxygen saturations, but thankfully she powered through the flight and did amazing!

It was amazing to see her laying in her crib! All the stress, worry, and anxiety left my body the moment I seen her. She looked so comfortable in her bed, and

Catching Up on ZZZ’s

Highlight of the PICU

Different PICU Stay

Diagnostic Cardiac Catheterization #3

GREAT NEWS – Surgery 

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