I know the mask looks more intense than the intubation tube, but trust me when I say this is such a major step forward to getting discharged and being home |
So here's a recap of days 17, 18 & 19 here at the
Stollery.
The original plan was to put a PICC line in on Wednesday morning and extubate later in the evening. Well, Evanna didn't end up going to the OR for the PICC insertion until 2pm, which meant that she came back asleep and sedated, so an afternoon extubation was off the table, and the earliest they would consider doing it was not until at least 8pm. Well during evening rounds, intentivist Dr. Ryerson said that because of Evanna's collapsed upper right lung and her fluid balance being more on the positive side, she wasn't overly comfortable in extubating that night (and they also don't like doing extubations at night in case something happens). So they upped her diuretics to "dry her out" and let her rest for the night.
The original plan was to put a PICC line in on Wednesday morning and extubate later in the evening. Well, Evanna didn't end up going to the OR for the PICC insertion until 2pm, which meant that she came back asleep and sedated, so an afternoon extubation was off the table, and the earliest they would consider doing it was not until at least 8pm. Well during evening rounds, intentivist Dr. Ryerson said that because of Evanna's collapsed upper right lung and her fluid balance being more on the positive side, she wasn't overly comfortable in extubating that night (and they also don't like doing extubations at night in case something happens). So they upped her diuretics to "dry her out" and let her rest for the night.
Thursday morning we came in and we had just barely missed rounds. The intentivist that was on, was one that we hadn't seen before and so I was a little apprehensive about how the day was going to go. They said they were thinking of extubating around 2pm because they hadn't stopped feeds until 8am. So Nick and I left to file some paperwork with Service Canada (because of all of this, we're eligible for PCIC – another form of EI, meaning I won't have to go back to work until later this summer to help care for Evanna and give me more time at home with her). We came back after lunch, and the waiting game began. 2pm came and went and the intentivist was nowhere to be seen. Now, I know I am not a patient person, but this journey has taught me a lot of patience. I am getting use to “going with the flow” when a CT or procedure gets delayed by a day, and I know that “hospital time” is different altogether, but we have been waiting for Evanna to be extubated for a long time, and the ENT specialist had given us the all clear Tuesday night. So at 2:30pm, when they were beginning another procedure on another patient and they ended up closing the unit (this happens at least once a day), meaning that Nick and I had to leave, and I began to break down. I understood that the PCICU was a little busy that day, but I wasn’t impressed with the fact that the intentivist and his resident hadn't been by to update us, and let us know the game plan. I expressed my anger and frustrations to our nurse, and she agreed and sympathized with what I was feeling. I felt like because the intentivist hadn’t been on while we’ve been here, he really hadn’t been on this emotional journey with us and understood everything we have been through. I’m sure he read and was told what has transpired over the past few weeks, but because he hadn’t been here, we didn’t have that relationship that we have built with the other physicians. We left the unit as we were told, but I left in tears. I was so done with everything, and I was sick and tired of Evanna still being intubated. I wanted her extubated, to stop seeing babies/kids come and go while we remain, and I was done with having things being put off.
We went out to the car so I could vent in private, and once
I cooled off, we headed back into the hospital. We were met by the resident who
said that while Evanna is ready to be extubated, they were also waiting for her
to wake up. We went back into the unit, and the intentivist came by to also
talk to us. By that time, it was almost shift change for him, and Dr. Vijay
Anand was about to come on. Basically, it became clear that this was not
happening for a few more hours, but I was happy that a physician we know
and trust was going to be there when it was done.
Evanna started to wake up a little bit around 7pm (nurse
shift change), so once orders were passed over, they decided it was finally time to extubate her. It went relatively smoothly and though she fought the
mask a little bit in the beginning, she settled out and fell asleep. Her blood
gases came back with great results, so it FINALLY looked like this extubation
was a success.
This morning Nick left for Calgary, and I went back to the hospital. She had a good night, and was even moved to the “overflow” area - where they put all the kids that are more stable and require less attention. They put her back onto full feeds, and they are slowly working on weaning the rest of the medications that she is on. They are pulling out another line tonight (her left femoral one), and are slowly working at changing her meds to oral ones. The biggest thing today, was I GOT TO HOLD Evanna for the first time in 17 DAYS. We cuddled for about two hours, and she fell asleep in my arms once we found her a comfortable position. It felt so good, and I just know that she was happy too. She was always looking at me, and had her little fingers curled around mine. She even reached her arm up so she could put her fingers in my mouth (something she likes to do when we are at home). I can’t wait to do it again, and I look forward to when we are 100% oxygen free.
This morning Nick left for Calgary, and I went back to the hospital. She had a good night, and was even moved to the “overflow” area - where they put all the kids that are more stable and require less attention. They put her back onto full feeds, and they are slowly working on weaning the rest of the medications that she is on. They are pulling out another line tonight (her left femoral one), and are slowly working at changing her meds to oral ones. The biggest thing today, was I GOT TO HOLD Evanna for the first time in 17 DAYS. We cuddled for about two hours, and she fell asleep in my arms once we found her a comfortable position. It felt so good, and I just know that she was happy too. She was always looking at me, and had her little fingers curled around mine. She even reached her arm up so she could put her fingers in my mouth (something she likes to do when we are at home). I can’t wait to do it again, and I look forward to when we are 100% oxygen free.
For tomorrow, I plan on having them bring down a swing for her, because I know she will just love that, and getting some more cuddles in! Some goals for the weekend is to lessen the support she is receiving on the BiPAP machine as she can handle it, and maybe even be on CPAP by Monday. I am also aggressively pushing for a Calgary transfer by the end of next week, but mentally preparing myself for two more weeks here in Edmonton. Most of the intentivists are on board with this idea, but they just want her to be at a point where she can go more than 2 hours without the BiPAP or CPAP before they consider her stable for a transfer. I called our cardiologist in Calgary, and at Tuesdays board meeting, they are also going to push for a transfer to get us home.
Anyways, it’s been a long few days, and though we had some rough patches (most of them having to do with certain staff members), we are still moving forward at a nice pace. Now that Evanna is extubated, I just know things will speed up from here.
Thanks for following along!
xo The Irvine Family
xo The Irvine Family
Vijay is my favourite ;)
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