One Year Ago Today: 02/01/2013 - Discharge Date Set!

(02/01/2013, Friday) I must apologize for my recent lack of information sharing. Last week was rough--particularly unpleasant to endure. This week was not without its challenges, but gratefully significantly better than last week--its just been hard to find/make the time to post about it.

I suppose part of my lack of posting is due to the looming possibility of discharge--didn't want to jinx it by talking about it--and honestly it seems a bit futile to discuss it as we've had **SO** many set dates which we've already missed. Mostly though, there have been so many times throughout this experience where we had a good day or two followed by the proverbial wheels coming off in some other aspect--it seemed typical to have an awful week followed by a few good days, so I've just been holding my breath waiting for the inevitable kidney punch*       *pun not originally intended, but left behind for posterity's sake.

All that said, for now, it appears that Evie's body may have run out of "other shoe(s)" to drop. I'm trepidatious, yet giddy with enthusiasm just at the idea that there may not be anything else significant that we need to plan for, resolve, or adapt to.

Evie:

• Receives 660 ml's of nutrition via feeding tube at night--roughly 700 calories.
• Weighed 18.35 kilograms at the end of dialysis today. (A 0.3 kg gain... most of it not likely to be permanent, but some fraction of it could be, so that is great news.)
• Still doesn't tend to manage to hit daily caloric intake targets on dialysis days, but is certainly doing better.
• Still no need for oxygen!
• Blood sugars are still a bit curious, but we haven't seen many crazy high numbers.
• Seems to have recovered from last week, and has not even napped the last two days (unless you count the 15 minutes we both fell asleep for while waiting for a technician in x-ray today.)
• ***Is scheduled to begin the offsite peritoneal dialysis training on 2/11/2013--and on a related note is scheduled for discharge from the hospital on the same day!***  We won't actually be home home until around 2/15/2013 or so.

One of the side benefits of her having been here so long, and finally appearing to be more stable, is that it has provided the opportunity to track down the local Osteogenesis Imperfecta (OI) specialst(s). We've talked to one of them at length a couple times now.

She's been experiencing some acute pain which they are testing her for a potential bladder/urinary tract infection. She's also been having a bit of intense discomfort due to the placement of the inside-the-stomach portion peritoneal dialysis (PD) catheter--they assume this will go way once she begins PD.

In short, she is bouncing back well from the physical/emotional trauma that was inflicted upon her last week.

And now, a few photos... Evie's little brother was able to come visit yesterday for the first time in a while. They both enjoyed it immensely. The last photo is a picture of the clip-on earrings she made this evening (we do a lot of crafts.)

 

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: 01/28/2013 - Talkin' 'bout Discharge

(01/28/2013, Monday) Dialysis is life-saving. This is a mantra one must repeat when the patient has been dialyzed to the point of vomiting one too many times. Evie used to view it as an annoying or unpleasant stop in her day. All the other patients are 60 years or more her senior, but we still managed to do kid things there: homework, TV, games, books, etc. She now views it as a place of suffering. Dry weight 18.0 kg.

She slept upon her return--she did not get much food today, so it is certainly a good thing she has a feeding tube to provide her with nutrition, regardless of how scant it may be. Meanwhile, I met with the nurse practitioners in charge of orchestrating discharge while she slept. We discussed possible discharge time-frames, and I reiterated the list of things I believe must be dealt with prior to a successful discharge with no touch-backs (re-admissions).

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.