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.
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.
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