Thursday, April 2, 2015

PCICU Day 172 - 179

So...we're still in Edmonton. Dr. Rebeyka and the intentivists were hoping to transfer us back to the Alberta Children's Hospital on Wednesday (yesterday), but Evanna's warfarin medication had only been restarted on Monday and Kid Clot (hematology) wasn't comfortable with her INR levels yet and they kiboshed that idea.
Over the past week, Evanna has continued to improve and get better each and every day. The daily lab work done on her liver showed she was improving very nicely and followed the exact trend they were hoping for. Unfortunately they still have no reason as to why Evanna crashed, and stated that they never find the reason for acute liver failure roughly 60% of the time. Based on how her liver reacted and then recovered, it all points to some bacterial or viral infection - however, we'll never know.
We continued to have problems with bleeding from her arterial line in her right arm, and though they did their best to keep it because it was still working well, they finally had to pull it out after 8 days. Her arm looks terrible, but I know with time, it will heal just fine.
Currently we're trying our best to try and keep moving forward with Evanna's progress and work towards discharge. It sucks that there is just some things we can't do until we're back in Calgary, so we're in bit of a holding pattern until then. Usually I would be ecstatic that we're still in Edmonton, but this time is different and so I'm definitely anxious to getting transferred as soon as possible. I'm working on getting Evanna strong by getting her into the tumble-form chair everyday to build some strength again, and Dr. Anand as agreed to introduce a tiny bit of feeds into her stomach today so we can eventually switch her over to NG feeds, and then even see if she can bottle feed again.
*Evanna has been NJ fed for the last 6 months, meaning food is going into her body past her stomach. This means her stomach hasn't food in it for a very long time, so we need to be careful and start out very slow and not cause her stomach go into shock.

It's been both a happy but emotional week for myself. I've gotten to hold Evanna lots, see some of her personality shine through, and Nick got to hold his little girl for the first time in about 75 days as he hadn't held her since mid January. However, we're coming up to 6 months in the ICU and we still have a ways to go. Babies come and go from this unit, but we still remain. I know our know our time will come, and what a glorious day that will be when we drive away from the hospital with Evanna in the back seat. Nick left again this morning, and though he dreads another trip back up to Edmonton next week, we really hope it will be the last one for awhile. I'm tired of living out of my suitcase, and I know Nick is tired of the weekly trips to and from Edmonton. This journey has definitely not been an easy one, and it has been an incredibly long one at that. A transfer back to Calgary is just one step closer to home, so we are really hoping that will happen early next week.
Thanks for continuing along and praying for our sweet girl.

Please remember to send a card for Evanna's 1st birthday. It's coming up quick, and if you want it delivered in time, make sure to get it in the mail as soon as possible! For more details on the "Cards for Evanna's 1st Birthday" public Facebook event, please click HERE. The address to mail the card to is listed in the event description, but please feel free to comment if you have a question or query.

xo The Irvine Family

1 comment:

  1. She's such a pretty little girl. Prayers for all of you….always.