One Year Ago Today: 12/6/2012 - Complications -- Just Can't Get Enough?

(12/6/2012, Thursday) Today hasn't been nearly as full of dialysis & plasmapheresis, but it has not been without its bumps in the road. The morning started off with the lousy sleep that I whined about in my last update. By 0800, the transport folks arrived to take Evie to dialysis. The problem with that was that the specialist had stated yesterday that she needed to go to plasmapheresis first so that she would be able to have the dialysis get rid of the extra fluid it left behind--thus avoiding the need for dialysis twice.

Trouble was, the plasmapheresis people were dead to rights certain that they weren't supposed to treat Evie again... so they would not make an appointment for her. I did not allow them to wheel Evie out of her room until we talked to the specialist. Eventually at 0900, for reasons that weren't totally clear to me, we hauled a not feeling so great Evie down to dialysis. Once we got there, we discovered her blood pressure was far too low for it to be feasible, so we made the return trip.

At some point, I felt her chest because she seemed to be breathing funny, and her heart was racing--check that: the technical term I am told is a "Heart Gallop" I can't say I've ever seen Alien but there are enough parodies out there that I get the whole monster inside type deal... and that is exactly what her chest felt like. The beat was extremely rapid and had a slight gallop rhythm to it, but along with that, there seemed to be something lunging around inside her chest like a car engine ready to torque itself free from the block. It was highly disturbing.

The Dr. in charge then ordered a chest x-ray, an electrocardiogram (EKG), and an echocardiogram.

Shortly after these, I spoke with the cardiologist who diagnosed Evie with myocarditis. Specifically, the echocardiogram indicated that the left ventricle in Evie's heart is totally dilated, and one could rate its performance as "failing". Really the whole left side of her heart is enlarged. Shortly after this discovery/diagnosis (around 1030), Evie checked back into the Pediatric Intensive Care Unit.

A swarm of activity occurred throughout the rest of the day. Sadly at some point Evie moved about in such a way that one of her IV lines came out, and due to where in her body it is connected, she began to bleed profusely--enough that later in the day she required a blood transfusion. The combination of the new discoveries and the associated medicine that she requires for the time being to help her heart come back to normalcy and the fact that her backup IV failed necessitated a game of marco polo to insert a new IV needle. She wasn't pleased. But on the 5th poke and after much painful rummaging around on every poke, she was able to be connected to the dozen or so different lines which were providing dialysis, oxygen, various health checks, and a variety of different medicines such as Intravenous immunoglobulin (IVIG), a medicine made of antibodies that the body produces to fight infection, to control the inflammatory process. It was particularly nice that some of them helped her sleep.

It is a slightly different type of dialysis machine that she is connected to tonight. It does its job continuously, much like a real kidney, so you are never disconnected.  It should not excite her heart as much as the standard dialysis machine which finishes a days work in about four hours. Unfortunately she has a low platelet count so they couldn't use a necessary anti-clotting agent, so it beeps a lot, but in her tired and medicated state, I think she'll sleep pretty well tonight anyway. I hope I will too as I've been falling asleep while typing the end of this...

Alibis & Answers:

• It turns out that the bleeding is not coming from an ulcer, but rather they think it stems from the lining of her intestines which were being attacked which led them to get so inflamed that they were protruding? (not the way it is supposed to be).
• I've confirmed that the type of dialysis that she will have at home if it indeed will be necessary (as it appears to be) will in fact be peritoneal dialysis.
• Both the parent-home and parent-away roles are rough, for different reasons. With Heather expecting our 5th child, the parent-away role (including the torture chair of lousy-folding-and-light-sleepy-ness) is a bit brutal, thus I am here.
• We'll need to get Evie on some type of nutri-drip because with her pancretitus she will continue to not be able to eat anything for days, and we're getting closer to it having been two weeks since she ate real meals with regularity.
• Going through something like this is hard. It is more hard in the fact that we've only lived here for two months, and other than a cousin temporarily stationed four hours away, our nearest family is an 17 hour drive from here.
• That being said, our neighbors are AWESOME! They have been so kind, helping us take the older kids to school so whoever is the at-home parent can stay home, which means TJ can sleep past 0645. Several of our neighbors have also brought dinners and gifts for Evie. I need to make sure I'm as good a neighbor for them.
• Sadly, none of our kids can visit Evie while she is in PICU. :-( here's to hoping she leaves it prior to the weekend being over.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.