Friday, October 31, 2014

PCICU Day 24, 25 & 26

Heart Headband courtesy of NOXXaz
Sorry for the minor delay in posting, especially considering the last post - I just sometimes like to wait until we have more answers before I fill everyone in. Things can be so hour-by-hour here, and so I like to wait until we know for sure what is happening - otherwise my posts would seem all over the place. Plans and decisions change all the time, especially if a test was done and the results call for more texts or a whole new direction is needed. Sometimes it can just be a difference in opinion between the intentivists that can also cause things to change quickly, so for clarity purposes, I like to wait a day or two in between posts, especially because this recovery has gone a lot slower than initially planned.

They did an ECHO Tuesday night (day 23), and an ultrasound of the head and abdomen Wednesday morning to make sure nothing was affected from her cardiac arrest. Everything came back with good results and no harm was done. Evanna was back to her normal antics of being a difficult, and they have to use soft restraints to help avoid her pulling out the breathing tube. When she wakes up - it's with a bang, and it takes a lot to keep her calm (she's definitely a natural red head).

Thursday was an extremely busy day. They took out her catheter (for the second time) and reduced some medications. At first we just had a diaphragm ultrasound booked, but radiology called saying they could do the CT right away, so she got that done right away as well. The CT came back with normal results, but the ultrasound showed some interesting results. It looks like Evanna has a paradoxical diaphragm (this just means the diaphram moves in opposite direction that its suppose too), but because it's only been a recent development over the last few days (according to xrays), they're not sure if they're going to do anything about it. Normally they would go in and "pin" down the diaphragm, but because of Evanna's MAPCAs, they will avoid it if they can. They want to do another bronchoscopy to see if there are any other issues before deciding that another surgery is worthwhile.

Today, Evanna has been extremely calm and content. She's pretty happy just as long as Nick or I are holding her little hand and rubbing her forehead. She was suppose to have the bronchoscopy, but in true hospital style, it just got bumped to tomorrow morning (so they've just restarted her feeds AGAIN, and will stop them at 3am tomorrow in hopes that the procedure will proceed). Once we have those results, I am hoping they can extubate Evanna within 24hrs.

It's been a rollercoaster of emotions over the past few days. I get many compliments of how strong I am, but I have to confess that I have moments where I am in complete frustration and agony over what has transpired. I'm pretty good at keeping my emotions in check and bottled up when discussing Evanna's situation with doctors, but tears will stream down my face the moment they leave. I am beyond belief that we are still here, and there are moments where I feel like this will never end. Everyday in the hospital seems like three, and it's worse being stuck in a different city that isn't home. I miss my bed, I miss my friends and family, I miss my kitties, but most of all - I miss family cuddles in the comfort of our bed.

Many people ask what they can do for us, and honestly, just saying that we are in your thoughts and prayers is more then enough at this time. I'm sure we'll have weeks of dinners provided for us the moment we get home, and visitors galore the minute we touch down in Calgary. I guess I would just like to say to please be grateful for everything you have and cherish your rambunctious children running around your house causing mayhem and havoc. Pick them up, hug them tight and kiss them from head to toe. Please know how lucky and blessed you really are and don't take any moments for granted.

xo The Irvine Family

1 comment:

  1. You guys are always in my prayers! And honestly I've never thought about another child (besides my own) as much as I think about Evanna!! I'm sorry this fight has been so long and rough. I truly wish it was easier. Hang in there though, you'll all make it through!