Friday, July 1, 2016

then and now

I’ve had Canada Day on my mind for months, and it’s because last year, it was the scariest day of our lives (thus far…). It was the day that Evanna went into complete Septic Shock, and we were informed that we were most likely going to lose her by the end of that day. Septic Shock is extremely fatal for healthy individuals, and so when you consider how sick Evanna was to begin with and her “sucky heart and sucky lungs”, Evanna should NOT have survived that ordeal. Thankfully with the incredible ICU team at the Alberta Children’s Hospital (particularly Dr. Mahoney and our nurse Jeremy), a mixture of modern medicine and countless prayers – by some miracle, Evanna pulled through that day. I can’t even describe what it feels like when you are preparing to spend your last moments with your child and thinking that you were going to walk out of the hospital childless. It’s often the moment I still cry about if I ponder about it too much, but it’s also a moment that Nick and I learned so much about ourselves. I think the major lesson we learned was what our “limit” was – while it was implied often, it was literally asked of us about how far we were willing to go and how much we were willing to put Evanna through. Suffice to say, that as much as Nick and I are “willing to go to the ends of the earth” for our child, we also know when enough is enough, and that if Evanna tells us it’s time, we would be willing to let her go for her sake. That day will forever be etched into our minds and it truly has impacted us for the rest of our lives.
Back in May, when were back in the PICU at ACH for out bronchoscopy admission, both Dr. Mahoney and Jeremy got to see Evanna, and I think it was such a sweet moment for them to see how far Evanna has come since that day (10 months later), and I know it made them feel that their efforts were completely worth it. Those two will always remain so special to me, and I always get excited when I run into them and get to show them updates on how Evanna is doing today.

So I felt this was a great opportunity for a “milestone” update, as a way to see just how far Evanna has come over the last year. Well, since coming home in November (we’re about to hit our 8 month mark!!), Evanna has continued to just THRIVE! Next week we will finally discontinue her Lasix, which means for the first time in 639 days (exactly 21 months || October 6, 2014 – July 5, 2016), Evanna will no longer be on diuretics. We will now be down to our “base level” medications, which essentially are all supplements (ie. Iron, vitamin D, aspirin, etc), and just can’t believe how far we have come when you consider all the medications she use to be on (the amount of sedation medications would make your head spin!).
From a medical standpoint – we are currently enjoying some stability. Like I mentioned earlier this week, we have two minor check-ups this whole summer, and nothing major until September. I’ll be pressing our cardiologist about getting better imaging of Evanna’s collaterals this fall, and seeing where Edmonton (Dr. Rebeyka) would like to go from here.  We then have our “Combined Clinic” with our ENT and Respirologist at the end of September which should hopefully shed some light on what the next year will look like from a trach/vent standpoint.

Lately our concentration has been PT/OT/ SPL and Evanna’s overall development. She sits up extremely well (however even though she doesn’t need it, she likes the comfort of the nursing pillow behind her), and can pretty much twist her body all around to look back at us if we’re talking to her. She can express to us when she wants her soother, reach for a particular toy that she wants to play with (and books for the matter), when she’s excited and happy, and has started to show normal toddler attachment to Nick and I. She loves playing with her feet all day long, claps and plays with her hands all the time and continues to be a very mellow and content child.
Her stamina had vastly improved, and can tolerate somewhat long trips out of the house. When we first came home, a quick trip to the pediatrician was just an absolute nightmare – full of puke and desats. We only went to church for just an hour a couple of times between November – February, but since Easter we have now been able to attend church almost every Sunday for the first part. Since the end of June we have now increased that to 2 hours (our church consists of “3 blocks” that total 3 hours) every Sunday, and we’ll see what the end of the year brings us. I would love to get to a place where we can take her to nursery, but I personally want to wait until she is somewhat standing/walking on her own. Either Nick or I would obviously have to stay with her the entire time (not about to put the responsibilities of a trach child on the nursery leaders lol), but I have a feeling Nick won’t mind the excuse to skip his classes and hang out with Evanna. Honestly we haven’t really talked about how we would like to see this unfold/transition take place, but it’s probably something we won’t worry about until after Christmas at this point based on her rate of development.

Evanna’s core and arm muscles are definitely getting stronger and stronger every day. She is so close to pushing herself into a sitting position on her own, does “push ups” all the time and somewhat can put herself into the “4-point position” for crawling. I feel she will be crawling sometime between late summer/early fall – which will mean all sorts of busyness for us. She can handle the standing frame for over an hour every day, but still refuses to put weight on legs on her own. She will do it while sitting in her exersaucer (use her legs to bounce around like crazy), but if hoover her above the ground, she basically keeps her legs in front of her and won’t put them down – something I am personally working hard at with her (Nick tends to concentrate on her arm exercises, while I lean towards her leg ones).

When it comes to eating, we’re still in a “holding pattern”, as we are very limited on what we can do for safety reasons, but we do our best with oral stimulation to rectify her oral aversion. We’ve noticed an increase in Evanna putting things into her mouth, and so while improvements to her oral aversion have been minimal at this point, they are still improvements nonetheless!

Overall, we are very thrilled with how far Evanna has come over the last year, and it’s been amazing to watch her soar since coming home back in November (particularly this spring). We were prepared to bounce in and out of hospital a lot, but have been pleasantly surprised to enjoy a little break from hospital life and stability since November.

xo The Irvine Family

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