Adventures with Ellie: When the goal makes no sense at all...

I’m trying to wrap my head around what is going on and what the goal is here, with bug. In rounds this morning (Wednesday 12/17), the cardiologist said that he was happy with Ellie's stats, but it’s a bad sign that she’s NOT going into heart failure. Huh? They were hoping that by installing the trach (I like “installing” better than “placing” because it makes her sound bionic), it would decrease the pulmonary vascular resistance (the pressure in the arteries to her lungs) and allow her to over-saturate and go into heart failure. Once that ball was rolling, they could band her pulmonary arteries to reduce this pressure and Ellie would then be getting closer to being ready for other surgeries. Since Ellie has been on the vent with her trach, her oxygen saturation hasn’t changed much (still hanging out at about 80%). This means that if they were to go in and do the banding surgery now (which is what we thought the plan would be), they would restrict the blood going to her lungs too much and she’d get pretty blue – which is obviously not the goal. So, we’re kind of in a wonky position, really. It feels so wrong that the cardiologists are not happy that she’s not going into heart failure right now (for the grammar police, I know that’s a triple negative… just reinforcing how wrong this feels). I guess in this situation, heart failure would be a good sign and it would mean that we could start moving forward. Right now we’re just hovering in a weird place. A weird place where we watch her silently cry and cough… and hope for heart failure soon. Ick – what kind of an alternate universe is this?

On the plus side, A BIG PLUS, Ellie has now gone through her first trach change… which was the milestone we had to pass in order to be able to hold her. I just got the okay to hold her a little while ago, but she’s currently storming. So I need to wait on her medicine to take hold and calm the storm, then get a nurse to help me manage the tubes and wires to finally hold our bug (for the 1^st time since 7:30am last Friday morning). It’s been a long wait (nothing compared to a lot of kiddos in this unit, but still). My next question will be, “when can I start putting clothes on this kid?” Brandon picked up the most adorable little tutu for her yesterday, along with a pretty little Christmas shirt that says, “Oh come let us adore me”. Cuteness!

Her big bright eyes looking up at me - LOVE!

For anyone who did not see these pretty pink piggies on FB... Ellie's first nail polish :)

I would say that maybe we’d be able to go back to a step-down unit soon so that more people could see her or so that the boys can finally see her, but they said we’d be in the CICU for a while yet… at least until they figure out the whole resistance thing and why she’s not in heart failure. Dang it! This is my least favorite place to be in the hospital. Wait, I take that back… the OR is much scarier for me. We’ll take the CICU. We did kind of make it our own this time. Ellie has her pretty prayer blanket and her name is on a banner in the window. We have cards and pictures from other kiddos, and Brandon decorated her door for the season. We’re hanging out… taking it a day at a time and praising God that our Ellie is not any worse than she is. She’s not smiling much these days… but I think she will when we finally get to hold her.

Daddy decorated Ellie's door for Christmas/winter

Update as of 6pm: I did get to hold Ellie this afternoon and I’m looking forward to more cuddles tonight. I was able to learn about changing the ties on her trach (and saw the pressure ulcer she has next to it). [For the other HealthFitness folks reading this, Smiths medical makes the trach ties… can I tell you that right now I LOVE Smiths?? Haha!] And they helped me put clothes on our bug today, too. So she’s dressed for the first time in 5 days, too. I adore this little bug.

I got to hold Ellie bug in the afternoon - finally!

Daddy got to hold Ellie when he was "home" from work.

To end this post on a very happy note, I have to share some pictures of our weekend with the boys. They are down here on weekends so that we get a few days a week to cuddle with them and and take them on adventures. On Sunday, we went to the Newport Aquarium to see Scuba Santa and spend time with friends. Daddy brought them back to Grandma and Grandpa on Monday morning. Monday evening, some friends of mine came all the way down here and took me out to dinner. I can't believe I forgot to take a photo while we were out - but I was so thankful to go out, catch up, and laugh until I about cried with these ladies... THANK YOU!!