(01/14/2013, Monday)
Yesterday's Extras
- Another vomiting spell claimed Evie's dinner during the night last night, which was
particularly worrisome, given that it was the only meal she really ate
much at all yesterday.
- Evie was able to Skype with her long lost best friend from Maryland
last night before bed. She read the entirety of a bare-book she'd
authored and illustrated over the summer which was based on their
friendship. They talked for almost an hour. I think that conversation
alone did more to buoy up her spirits than anything else that has
happened lately.
Today
0630: Woke up Evie to try to get her to eat breakfast prior to
dialysis. Helped her wake up happy by letting her play her My Little
Pony app. She ate a quarter portion of oatmeal.
0700: Dialysis begins. During regular dialysis, they removed 0.5
liters of fluid. Then we extended by a half hour, and during the
overtime we were no longer filtering the blood so fluid removal was the
sole focus. We removed an additional 0.5 liters, for a total of 1.0
liter removed on the day, at which point we conveniently no longer
required additional oxygen. Evie once again weighs just over 43 pounds.
1230: Got back to the room to eat breakfast/lunch which had
already arrived and was getting cold due to our overtime play in
dialysis. Shortly after our arrival, the nurse's assistant (NA) came in
to get Evie's stats (blood pressure, temperature, heartrate). Prior to
her arrival, I'd had Evie carefully use her walker to move from the bed
to the chair to practice walking. The NA initiated the following
conversation:
- NA: She needs to get over here and stand on the scale, I need to weigh her right now, and then get her stats.
- ME: She was weighed in dialysis twice. She doesn't need to be weighed again, she just really needs to eat.
- NA: No sir, she needs to walk over here, she has to be weighed here as well and I must get her vitals now also.
(Enter Evie's nutritionist who has come to collect our food intake journal.)
- ME: [EYES BUGGING OUT OF MY HEAD] My child kept
virtually no food down yesterday. She has been awake since 0630 this
morning, and has eaten next to nothing. She MUST eat now -- leave
the room now. There is nothing you need that cannot wait -- you will
not weigh her. You will come back later if at all for the other things.
(Exit NA)
- Nutritionist: [Shocked look on face] I'm glad food is the priority...
- ME: Evie will eat now. Food journal is on the door. Ask me questions while she eats.
1300: School. Dominantly a reading comprehension focus today, as we'd done lots of math during dialysis.
1345: Cardiologist comes by to talk to me about her
pericardial effusion
(liquid surrounding her heart). The average person has about a teaspoon
of fluid, and is a good thing as it helps reduce friction. Evie has roughly
1/3 of a cup surrounding her heart right now. Currently isn't impacting the
effectiveness of her heart's squeeze though, so hooray for that.
1400 -- 1600: Playroom: Played a kid's board game whose target
audience is sick kids at the hospital -- you spend the whole thing
collecting tokens, and sharing your feelings -- good chance to talk
through some issues.
1630: Evie makes plans with the recreational therapists to host a
movie night in the playroom... after deliberation she selects "The
Incredibles"
1645: Pulmonologists (lung doctors) come by to discuss her recent
oxygen need, and her cough. They theorize that the cough and oxygen
need stemmed from fluid remaining where it shouldn't have been which
made sense, given the fact that prior to today's session, no fluid had
been removed since last Wednesday.
1705: Another Pulmonologist comes and talks more about it.
1715: Skyping with Grandparents.
1745: Eating -- Grilled Cheese Sandwich (That's right, they're
not just for breakfast anymore!, Macaroni & Cheese, Chocolate Chip
Cookie... I've been directed to have her eat whatever she'll eat, so
long as she keeps it down.
1830: Skyping with her Maryland friend.
1900: Start getting ready for bed.
2100: Light's out--yeah, it took forever tonight.
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.
