One Year Ago Today: 01/15/2013 - Inspirational People

(01/15/2013, Tuesday) Evie woke up around 1000 to discover that the extra dialysis session scheduled for today had been canceled. (Hooray!) Likewise, her mom's visit was canceled for the 2^nd day in a row. (Boo!) So after doing a bit of in room PT and eating, it was great to have one of the child psychologists drop by for a crafting/chatting session to make the day more exciting.

Regrettably it caused her to miss school, but I'll call it a mental victory-- although it seemed rather light on the talking about feelings side of things, and much more like a visit by recreational therapy. It is what she needed.

Afterwords she took a bath, and we found a nurse to french braid her hair for us. We ate a late lunch/early dinner as tonight was the movie night activity she'd planned with recreational therapy in the playroom. We enjoyed making little eye masks and watching Disney's "The Incredibles" with a bunch of other kids.

I got talking to the mom of one of the kids we play with in the playroom more--a 6 or 7 year old seemingly care free happy go-lucky fellow with lots of energy that doesn't seem sick at all--turns out in his entire life, he's never spent more than a month away from UNC Chapel Hill before being hospitalized for this, that, or the other thing. Poor guy has no colon, amongst other things. The mom was telling me about her other kid, his sister who sounds suspiciously like an OI patient. The mom seemed much more well adjusted than a few of the parents I've met here--lucky for the little guy that is the case, it sounded like a tremendous load to bear. Inspirational people.

We got back to the room about 1930, ate a bit more food, and she got to bed around 2100. I spent an hour trying to get the nurses to confirm/deny the appointment time for dialysis Wednesday, but they seem unable to find out for certain. They told me to plan on the afternoon, as that was verbally the plan from the kidney team.

Evie is sleeping well.

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.

One Year Ago Today: 01/11/2013 - Hospital Friends

(01/11/2013, Friday) This morning brought dialysis. Unfortunately Evie's body had no fluid to give up today, so although we dialyzed for 4 hours, it simply filtered her blood. Based on her fluid intake numbers, this doesn't really surprise, as she is only drinking maybe 400 ml's a day (about a pint).

We had a quick lunch (pancakes) and then went to the hospital school. After school, we went to the playroom for a while. We played chutes and ladders and connect four with the little boy she'd given a birthday present to when she arrived on the 6th floor last week. Afterwards, we did some in room PT, and used the walker to get us back and forth across the room 3 or 4 times!

We've been trying to visit an 11 year old who arrived here about a week and a half ago, who has also been diagnosed with HUS, and we were finally successful. She hasn't had the complications that Evie went through, so she has thus far avoided pediatric ICU. It is early on, so she is still in the sleeping-most-of-the-time stage, but it was nice for Evie to chat with her as she's going through some of the same issues. Afterwards we went back up to the playroom for a half hour. We ran into Greyson (a boy she made a card for and gave a present to) and his mom -- it sounds like he may get to go home next week. With all the activity, she was tired enough to go to bed at 2000! Good deal.

I forgot to mention yesterday, Thursday morning was the first time I heard anyone mention the d-word. (discharge) The instigator was one of the medical residents which we'd spent time around while we were down in Pediatric ICU. On a random visit he was talking to Evie and I and here is a rough gist of the initial conversation:

Doctor: "So are you guys excited for next week?"

Me: "Ummm, what's next week?"

Doctor: "Evie, we're going to try to get you and your dad out of here! Isn't that great?"


I'll be the first to admit that I am really done with hospital living, but I was a bit shocked for two reasons. First, from a managing expectations standpoint, I'd been led to believe we'd be here at the hospital for another month. Second, I was flabbergasted that the first time it was discussed, it was done directly to Evie--no precursory warning to the parent, no opportunity to help get her in the right frame of mind for the idea.

The rumor had two affects on Evie.

• It made her a bit excited, because she's more tired of being here than I am.
• It made her terrified, because she knows her body is not well. She started worrying about whether she could survive at home, and she started thinking about how awkward school might be.

The way the situation was handled was regrettable, but Evie and I have been able to discuss things and I think she's feeling better about it now.

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.