PCICU Day 136 - 143

Photo of Evanna taken on Monday (23.02.2015) before she got really sick.

So Evanna's transfer went incredibly well, and she slept the entire way. It's been a crazy few days, and it just goes to show how quickly things change around here. We initially didn't think Evanna would be transferred until later this week, but a bed became available, so Calgary wanted Evanna transferred as soon as possible.

Evanna had a pretty good week last week, but it was clear that a medium paced wean off of the ventilator was not going to happen. So last Wednesday the intentivists met together, and it was decided that a very slow wean in Calgary was what was best for Evanna and our family. Nick and I were slightly disappointed, as we really love the PCICU at the Stollery, and were in no rush to transfer Evanna back to Calgary - especially because she was still intubated and we're in limbo between trying to extubate Evanna one last time and a trach. Nick will also joke that he now has to put up with me more often now that I'm back in Calgary - oh true love at it's finest!

We told the intentivists that while we'll go along with their plan to transfer Evanna back to Calgary, we want the transfer to be less painful then last time, and to transfer her any day BUT Saturday. I was in a wedding party for my friend's wedding back in Calgary, and it would really cause a huge inconvenience if they were to transfer Evanna that day. I understand the whole bed situation, and you take a bed when you get one, but these plans were made last year, and it if it meant that we had to pass up on a bed - so be it.

On Friday morning, Nick' mom came up to Edmonton so we could get ready to leave, however, Evanna was going through some withdrawals that morning (a combination of a decrease in her sedation medication, and the fact that they had to turn off her hydromorphine for 2 hours to give her another transfusion), so she wasn't very happy and we were worried about leaving her. But by the time Grandma Sandy arrived, Evanna started to come around and wasn't as agitated. We were suppose to leave around 2pm, but the Calgary transfer team was bringing a kid up to the Stollery, so Dr. Ryerson asked if we could stick around to have a mini meeting with everyone. Nick and I left immediately after we talked with Dr. Gilad (the Calgary intentivist), and drove back to Calgary. That evening, our ward was having a couple's Valentine's activity, and because I haven't seen some of my friends from church in a very long time, I asked Nick if we could go. It was a good evening filled with lots of fun and hilarious games, as well as hugs and well wishes for our family.

Saturday morning finally arrived, and it started really early. All the bridesmaids got ready at my mom's house, and we left at 9am for the Calgary Temple. I'm so glad that Nick and I got to attend the sealing, and it was definitely something I needed. Bev looked absolutely stunning, and she was just glowing. It was pretty much the first time that I had met Andrew (her fiancé), and it was so sweet to see how emotional and happy he was to be there and get married. After we left for pictures, and boy - was that wind COLD! 

After the sealing, Nick and I had received a text from his mom stating that Calgary had a bed, and wanted to transfer Evanna that day. Thankfully Edmonton was able to hold them off for a day, and the PCICU asked that we give them a call back when we had a free moment. So while we headed to High River for the reception, I called the PCICU and was able to talk to Dr. Ryerson. She told us the plan, and though it was a tad inconvenient for me, a Sunday transfer was in the works. 

The reception was beautiful, and it was so great to see everyone. I didn't stay in too long once the dancing started, but Bev understood my situation and was fine that I ducked out a little early.

At 6am on Sunday morning, I hit the road back to Edmonton so I could be there for the transfer, and pack our stuff up at the Ronald McDonald House. Nick had to work that morning, but it ended up working to our benefit. Because Nick works in the area of the children's hospital, he ended up taking the Calgary transfer team to the airport, and was hoping to be the unit that would pick her up when Evanna arrived back in Calgary. The transfer teams got to the Stollery around 1pm and began to pack Evanna up. It always amazes me at how long it takes to do that, but they're obviously making sure that she is as safe as can be before she's put on a plane. Once the transfer team left the hospital with Evanna, Sandy and I rushed back to the Ronald McDonald to pack the rest of my belongings into my car, and do a quick cleanup of our room. By the time I had left city limits I had learned that Evanna was already 30 minutes away from touching down in Calgary, and Nick wasn't going to be able to pick Evanna up as he was held up at another call. However, one of Nick's friends and old partner Tia was assigned to pick Evanna up and she messaged me that she was on her way to the airport. It was definitely nice knowing that someone we knew was going to pick Evanna up and be there with her. I was informed that the transfer went very well, and Evanna slept the entire way. Nick was actually able to meet the transfer team at the hospital, and was able to walk with them into the PICU. At one point the charge nurse asked "Who's the overly concerned Paramedic?", too which someone responded that he was Evanna's dad. I guess it looked really confusing because he was in uniform and came in with the transfer team, but was stroking her head and holding her hand lol. 

Sandy and I arrived about an hour later and once things truly settled down I left and headed home to go to bed (7 hours on the road can take a toll in yeah).

Monday started out okay, but Evanna started to take a turn for the worse. She spiked a temperature, so they ran cultures and started her one some antibiotics. Thank goodness one of my favourite Calgary nurses was assigned to Evanna, and kept on top of everything. By the time I left that night, Evanna was doing very well and I was happy with how things were going.

When I came in on Tuesday, I came into a much different situation. Evanna was fighting the ventilator (meaning she wouldn't takes the breaths the machine was giving her), and no matter what they did, they couldn't calm her and fix her. She was puzzling all of the intentivists, and the only thing that would fix it was to paralyze Evanna. They decided to do an emergency CT to see if that would give them any answers. Unfortunately the CT didn't show them anything, and they were kind of at a loss as to why she was acting the way she was. They brought in Infectious Disease and they suggested a stronger antibiotic. Later that night they switched her over to NAVA like I had asked during rounds that morning, and she improved slightly. They also had to take out the arterial line from her right arm because it was starting to blanch and cause issues, however, they were unable to get another one in her that night and decided to wait until this morning to try again. It was an extremely long day and so once shift change happened I left the hospital and headed home.

Today has continued to be rough. Evanna has had infections before, but this one is a doozy. Nothing is coming back on the labs and it's been difficult to keep her oxygenation up. They did get a new arterial line in her left foot, but even on 90% oxygen (that's a lot!) she's been difficult to keep stable. They paralyzed her again around 4:30pm and she's been bagged and suctioned multiple times with nothing coming up (usually they'll get lots of secretions when they suction when she's sick). They are throwing the book at her in regards to try and bring her around and are at a loss to explain why she's acting the way she is. Due to the fact that we have to keep her very sedated, she can't be on NAVA (she has to be breathing on her own to trigger the machine), so she's currently just on the regular ventilator.

Moving forward we are hoping that whatever she is fighting will subside. All the disciplinaries (ENT, Respirology, Cardiology, PICU, etc) are all meeting tomorrow to discuss a plan (long term), and Nick and I are discussing what we would like to do (trach or try another slow wean and extubation). Until Evanna is over whatever it is she has, we won't make any concrete plans, and she will for sure be having another bronchoscopy (a request made by Dr. Rebeyka) either later this week or early next week.

I know I keep asking this over and over again, but please keep Evanna in your thoughts and prayers and that a solution will present itself. A decision to proceed with a tracheostomy weighs heavily on Nick and I, and we are just scared to make the wrong decision. Do we just trach so we can work towards bringing Evanna home, or do we try another extubation in hopes that Evanna will succeed and avoid a trach? Surgically and anatomically, Evanna should technically extubate, but no surgery can fix muscle and lung weakness, and only time NOT intubated can fix that.

xo The Irvine Family

Visitors! We (well I) absolutely love visitors, so if you are at all interested in coming to see Evanna and I (Nick isn't here as often), please feel free to do so. Before you do, here are a few tips: 

1. There are no set visiting hours. The PICU is a 24hr unit, so as long as I'm here (which I usually am from 9am-9pm, give or take), you are able to visit.

2. Message me first! Either by text or Facebook, let me know when you would like to come by. I try to space people out, so not everyone is coming at the same time, and make sure I have nothing planned (like errands) while you're here.

3. Feeling sick? Have a cold or runny nose? Then please stay away! Being in the hospital already exposes Evanna to her fair share of bugs, and the last thing she needs is another one. Also, I'd appreciate you be up-to-date on your vaccinations. I'm not talking about flu shots - just your good ol' fashion child vaccinations (in case you're wondering where we stand on the whole vaccination debate - now you know).

4.  Please know that visitors are the highlight of my day, so try your best to come when you say your going to come UNLESS you're not feeling well (see #3). We're going through a very emotional and exhausting journey. I've opened up and been very public about our situation, and invite you to come visit, hang out and see for yourself what we go through everyday. Though I don't take it personally when people cancel, it doesn't necessarily help either and can unfortunately add to my stress level. Again, I LOVE visitors and having someone here to talk to during the day. It makes my day and lightens the mood, but cancelling plans to come visit is just another thing I'd rather not deal with.