Happy Belated Thanksgiving & Merry Holiday Season to all!! I apologize for the lack of updates, but there hasn’t really been much to report…
Emerson remains in the PICU – off intestinal feeds, on IV nutrition, & hooked to monitors measuring her heart activity in the face of unstable potassium levels. As you may know, potassium is a critical element in our body and is crucial to proper heart function. Our bodies have a miraculous way of regulating potassium to within a narrow margin at which our hearts beat regularly. Potassium levels too high or too low cause irregular heart rhythm and can be life threatening. Emerson’s little body, sadly, seems to be losing the ability to regulate many critical elements including potassium. The team is trying hard to determine what she needs and to regulate her levels with replacements. It’s a very tricky undertaking, though, as our needs are not static throughout the day and there are many variables that affect it all. It has been a slow & arduous process trying to pinpoint exactly what she needs and when, but we’re getting close.
In addition to potassium instability, Emerson’s outputs are still too high, she’s having trouble maintaining an appropriate water balance in her body, and her blood sugars have been low (despite a significant amount of IV glucose infusing into her body around the clock).
Add it all together & it’s prompted the team to order brain imaging for tomorrow morning. “We don’t want to go fishing, but we need to look into why she’s having so much trouble right now… especially in the absence of another, plausible cause” – that was the word on rounds this morning. They initially believed this was all kicked off by a bout of the stomach flu. Five weeks into the admission, though, & it’s becoming more difficult to explain. On the list of things they’ll be looking for include a tumor in the pituitary/hormone-regulating region of her brain. The prospect of that is concerning, but I’m choosing to believe that we’re simply ruling it out ;).
The plan for this week, then, includes a brain MRI, a trip to the OR for a new central IV line, more tweaks to her potassium and other meds, and (maybe maybe) an initial contact with our home health pharmacy. Yes… HOME health! We’ll have to return after the holidays, but everyone is working very hard to stabilize Emerson enough that we can travel home for Christmas. We’ll accept some risk, certainly, in doing so but are willing to take that risk to be home together this month, even if only for a few weeks. We never know which holiday will be Emerson’s last – we treasure and fiercely protect every one right now. If all goes well, we hope to fly home next week and will return to Omaha after New Year’s. Emerson will re-admit at that time and we’ll pick up where we left off… trying to sort out her electrolyte/hormonal imbalances and work back to intestinal feeds.
Medical stuff aside, Emerson is ready to go home & misses her school friends terribly. She is very sad (as in big crocodile tears sad) that school will be out for winter break when she gets home & asked the surgeon today if she can “please please PLEASE” go to school for a week before coming back in January. The surgeon said yes :). I’m very thankful to this team for helping us find that delicate balance between necessary medical intervention and quality of life.
In addition to feeling sad this week, Emerson is also feeling scared about going to the OR. With every passing admission she’s becoming more and more aware of what’s happening here. She had on-going conversations about it with her stuffed animal friends over the weekend and she’s been obsessively talking about it with me all day. Her fears are real and the conversations are heartbreaking… she should be consumed with thoughts of play dates… she should not be consumed with fears of death. But she is. Oh how I wish life could be different for her.
Emerson is on the OR schedule for mid-morning tomorrow and she’ll be taken to MRI directly afterwards. I’ll let you know how it all goes!
* & just to clarify – the central line placement scheduled for tomorrow is a routine procedure & one that Emerson’s been through many, many times before. In all, it carries a very low likelihood for complication. She doesn’t understand that, though, & is scared.