|Evanna on high flow - before being reintubated (Headwrap from Kennedys Collections)|
So it's been a week of ups and downs. I'm definitely thankful that Nick has been here with me, because we're facing some pretty big and tough decisions, and there was really no one right answer. On Monday, Dr. Duff came up with the idea that maybe we should do sprints 3x a day onto high flow for a period of time, and try increasing that time everyday. Well it kind of worked for two days, and we were ecstatic at the "progress" Evanna was making, but we began to run into problems yesterday, and talks of another open heart surgery began.
We met with Dr. Rebeyka in his office (Nick said it felt like we were going to the principles office lol), and we were joined by Dr. Aditia. They told us that after going over everything, and taking into consideration on how Evanna is doing now, they believe that proceeding with another open heart surgery was the best way to go. Yes Evanna is still extubated, but truth of the matter, Evanna is still being ventilated on very high BiPAP settings - the only difference is that she doesn't have a tube down her throat. However, another open heart surgery won't necessarily guarantee a fix for everything either (in regards to her airway issues and avoiding a trach), so the surgery isn't exactly a perfect solution either. On the flip side, if we went through and transferred back to Calgary and proceeded with a trach, we're still not dealing with the compression issue, which means Evanna could quite possibly require a trach and vent for an extended amount of time (we're talking years here). It's been so hard for Nick and I, knowing that not all the options are a complete solution, and neither option is necessarily going to bring Evanna home anytime soon. Dr. Rebeyka told us that we didn't need to make a decision right then, but he could do the surgery on Monday morning if we wanted to proceed with a second open heart surgery.
We left his office and went back to the PCICU. Evanna still looked miserable, but we did another high flow trial (we missed the very first one that morning, and apparently it didn't go that well). Though the 2nd trial of high flow for that day wasn't as bad as the first, it still didn't go very well, and we were disappointed with the overall progress Evanna was making. I originally asked about reintubating Evanna that night, but Nick wanted to wait and see how she would do today (Thursday). Evanna wasn't in danger of remaining extubated, so while Dr. Anand said he himself would intubate Evanna that night if it were up to him, we asked if they would hold off for one more night.
This morning we came in and were told that Evanna had an alright night, but she required a lot of sedation to keep her happy and content. At 10am we did another trial of high flow, and Evanna did quite well. After we went to Dr. Rebeyka's office again, as Nick and I had a few more questions in regards to the surgery. During the meeting we came to an agreement to book the surgery for Monday, but keep Evanna extubated and continue with the high flow trials.
Later this afternoon we tried Evanna on lower BiPAP settings to see if anything would improve in regards to Evanna's agitation (she REALLY hates the BiPAP mask), but her work of breathing got worse and her CO2 began to climb. By that time Dr. Cave (our primary intentivist) came by and talked to us, and gave us his opinion. In short, he said that of this were his daughter, he would do the surgery. That kind of made things pretty clear, and though we were leaning towards going through with it (Dr. Rebeyka and all of the other intentivists gave us their opinion and said another open heart surgery was the way to go), having our primary intentivist say what he would do in our situation, kind of made the decision much easier.
We also asked Dr. Cave his opinion on whether we should reintubate Evanna as soon as possible or wait. He said that based on comfort level, he would elect to reintubate Evanna tonight. There was no danger to leaving her extubated, but she hates the mask, can't have her soother, uses more energy - making her more tired, and overall requires much more sedation to keep her calm and not agitated - where as Evanna is much more comfortable while intubated.
So the plan is to reintubate Evanna tonight, and proceed with another open heart surgery on Monday morning. The surgery entails going in and switching out her current conduit for a smaller one, and possibly insert a valve to help decrease the amount of leakage that is happening.
It's been a stressful, confusing and hard couple of days for Nick and I, as we ultimately had to make this decision - and another open heart surgery was incredibly hard to agree too. Especially because we're putting in a smaller conduit (which means Evanna will require a third open heart surgery sooner to replace it for a bigger one), and we are still facing the possibility of of SIXTH surgery in the very near future (tracheostomy).
Again, all that we ask for is continued prayers, and keep in Evanna in your thoughts this next weekend, and especially on Monday.
xo The Irvine Family