My heart is absolutely broken. I'm devastated and starting to loose a little faith and hope.
They had to reintubate Evanna late on Monday night. Her heart rate was very high, her oxygen levels were consistently dropping and her CO2 levels were starting to climb. They were very scared that she was going to crash again, so they decided to intubate her before she got to that point again.
Over the past week, we've been going over what our next step is going to be, and with 4 failed extubations, we're now facing the fact that Evanna needs a tracheotomy. It's been a major shock and took a few days to wrap our heads around it, considering this was nowhere on our radar just 4 weeks ago. We know this is a temporary option - but it will be a LONG TERM thing that we have to deal with. How long? Well respirology and ENT have said that it can take years for children to grow out of Tracheomalacia. This step isn't necessarily going to get us home super quick either. First there's the procedure, then recovery, and after that it can take MONTHS to tweak vent settings, train Nick and I how to care for Evanna, and then on top of that - setting up homecare. What is homecare? Well basically, for the duration of time that Evanna has a trach, care providers (generally nursing aids and LPNs) come over to our house and watch Evanna at night, so we can sleep. We have so much information being thrown at us, your head would spin.
It definitely took us a few days for us to come to term with the situation, and while we're still processing the impact this is going to have on our life, we know that this will soon become our "new normal".
On top of all of this, they also decided to take a look at Evanna's heart and to see where she stood from a cardiac standpoint. On Wednesday they did an MRI, and while it showed that her bottom ventricles were doing better compared to last weekend, Evanna had had some significant narrowing in her collaterals on the left side and not very much blood flow into that lung. They're sending those images to Dr. Rebeyka and Dr. Rutledge in Edmonton to take a look, and they're going to discuss her next week at Tuesdays cardiac board meeting. Dr. Fruitman said that the narrowing is bad enough, that there is a possibility they won't be able to do anything about it (ie. balloon or place a stent into it). After some conversation, I asked her to be a bit more frank with me and what this means for Evanna's life. She said that at this point it's hard to predict her life expectancy, and we could be facing the fact that she's terminal (nothing in the immediate future, but something we may need to come to terms with).
So now what? Well everything is on pause until Tuesdays meeting with Edmonton. We need to see what Dr. Rutledge (she performs the Cath) says and determine what order to do things in. Do we go transfer Evanna back up to Edmonton immediately to do a Cath and then back to Calgary for the tracheotomy, or do we proceed with the trach and hopefully a Cath can be done in the next few months.
It's been an incredibly hard week for us and there are just a lot of unknowns and new plans that have been thrown our way. We'll know more after Tuesday and I just hope there is something they can do for her heart. In the meantime, I had them switch our her oral intubation tube for a nasal one so Evanna could at least have her soother back (it was the least I could to do - poor girl deserves a break). She also got her 6 month immunizations and the flu shot.
xo The Irvine Family