One Year Ago Today: 01/29/2013 - Schooled & Cookies

(01/29/2013, Tuesday) Evie made it to the hospital school today for the first time in over a week. We went there first thing in the morning, right after breakfast. After 50 minutes she was entirely spent, and ready to go back to sleep. We'd planned to go to the playroom, so she fought through it. We ended up making pumpkin chocolate chip cookies--or at least I did while she slumped over the table. She went to bed. When she woke up nearly three hours later she had a cookie and declared herself full. After she was awake we were able to spend time with an endocrinologist as one of my items the day prior was to have her assessed for diabetes, so we're back to blood sugar checks prior to meals. She weighed 18.2 kg this morning.

Her high point today was making friendship bracelets while we watched the Disney Channel.

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: 01/16/2013 - Schedule Mishaps & Unplanned Successes

(01/16/2013, Wednesday) At 0200, the nurse informed me that we would in fact be picked up at 0700 for dialysis. Seemed odd, given the conversation that I'd had with the kidney team (deciding that from now on she'd do dialysis in the afternoons.) I questioned the nurse, but she sheepishly exuded confidence, so I just accepted it, and figured there must have been a new patient with more acute needs which altered the schedule.

I woke Evie at 0630 in an attempt to get food in her (microwaved oatmeal). At 0800, we were still waiting for the transporter to take us to dialysis. Our day-shift nurse called to discover that dialysis had never intended for her to go to dialysis at 0700, but rather had been planning for an afternoon appointment as we had discussed (in effort to avoid compromising her sleeping/eating schedules). Since we were already awake, they squeezed us in at 0930, and I managed to get Evie to eat more while we waited.

Evie was a homework track-star during dialysis--she did about 20 pages of homework while they removed a liter of fluid. Due to our late morning dialysis, we went straight to school even though Evie hadn't had lunch yet. I went back down to her room to collect her meal, and took it upstairs to the school so she could eat while she worked. We certainly could have skipped school given how hard she worked in dialysis, but I figured it would be a good distraction since today marked the 3rd day in a row that she thought mom would be able to come, but wasn't able to do so, and we'd already missed school on Tuesday.

While she was still at school I came back downstairs to talk with our case manager/social worker about what we'll do after we check out. It is looking like it may get ugly from a co-pay perspective... need to do more research in that area though.

When Evie returned from school we had another echocardiogram, after which we both took a nap, roughly 1630. We didn't wake up until almost 2000. The nap was good, the timing not so good. We woke up too late to order dinner, but the grill in the cafeteria was still open... and her nurse was able to order her a grilled chicken sandwich. Shortly before dinner arrived she vomited again (too much liquid drunk too fast) this time losing the majority of her evening's medicine. The up side is she hadn't eaten yet, so what she did eat for dinner, she kept down.

Due to the late nap, we stayed up and watched Disney Fairies "Secret of the Wings," (which she loved) and then Skyped with Aunt Angela and family. She really enjoyed it--particularly the inquisitive questions that her cousins asked which her sisters have never managed to ask. By the time she got to bed and was truly asleep it was closer to 0200. Bummer. She's desperate to go to the morning playroom session, but I'm not sure how solid of a plan that is.

Just before bed, she surprised me with a very epic achievement (100% her idea with no prompting from me): She used her walker to go from her bed to the bathroom, then stood UNAIDED for nearly a minute while washing her hands. She had a hard time falling asleep as she was giddy with excitement which she justly felt over the milestone.

Evie:

• Is keeping food down "better" and her appetite is improving.
• Had 1 liter of fluid removed today via dialysis
• Weighs 42.4 pounds.
• Still has a cough, but it has been merely an acquaintance the last day or two... here's to hoping it will become more of a bad ex-girlfriend that you remember, but you never hear from or see anymore.
• Balanced and stood on her own for a minute today!
• Looks forward to trying to use her walker a bit in the playroom tomorrow.
• Is getting her indomitable spirit and swagger back.   :-)

On the Homefront

My poor angel of a spouse continues to suffer while I am away, and sadly there is nothing I can do about it. Heather wanted to visit us on Monday, but little brother came down with the flu very suddenly that morning, while eating breakfast prior to being dropped off at a friend from church's house. Babysitting arrangements had already been made for him on Tuesday as well, but he continued to vomit through the night, so Heather couldn't come on Tuesday either. Surely she'd be able to come Wednesday... but it turns out she caught what he had, and got sick in the wee hours of Wednesday morning as well.

How does the phrase go, when it rains it projectile vom***? Never mind. Anyhow, while at home sick herself, blanketed by my still recovering toddler (recently re-monikered "King Cling") the school called to tell Heather that Evie's younger sister had just lost her breakfast on her desk in the classroom. Heather was too out of sorts to manage to wrangle little brother into the car--luckily one of our church friends was only a phone call away to lend a helping hand. Hopefully Evie's older sister will miss out on the fun--wish I could help, yet so glad I'm not near enough to contract it

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.

One Year Ago Today: 01/07/2013 - Momma Bear & Mr. Mom

(01/07/2013, Monday) Evie's blood pressure was lousy through the night... in the 140's over the 100's, which caused them to come in frequently to perform manual blood pressure checks. She coughed a lot and slept until 1000. They added a new medication (a blood pressure patch) at 0900. Evie went to dialysis and they removed a liter of fluid. Unfortunately she missed school because she got back late. She did make it to the playroom though (aren't we good with our priorities?) and enjoyed playing "Don't Break The Ice" with Mommy. Afterwords Heather took the gloves off and challenged Evie to "Uno" and Evie destroyed her every time, for several rounds.

She had PT and the recreational therapist was on-hand as well for moral support. Every time it was Evie's turn (Candyland I think) she had to stand up using her walker. She did well.

They kept blood pressure cuff on Monday night, and momma bear didn't allow any manual blood pressure checks. The nurse's assistant came in to try to weigh Evie around 0330 and momma bear grew four extra feet as she reared up on her hind legs to protect the cub.
 
On the homefront: As alluded to previously, Heather and I had formulated a plan where we swap places halfway through the week so I was home on Monday. This enabled me to get the girls to school, drop baby brother off to be babysat at the house of a friend from church, so that I could spend time tying up loose ends at work. It had been well over a month since I had been there, and although I had not forewarned my co-workers that I had any plans to come in, I was immediately sucked into a technical discussion upon my unscheduled appearance.

My team continues to be crazy busy and would be even if I were not absent, so the fact that I continue to have no plans in the short term of actually being at work until things with Evie are able to reach some kind of equilibrium is a bit stressful. My Monday was not overly restful or therapeutic, but it was very Mondayish. I returned home and picked up all the kids (sans Evie), and then ran several errands: post office, grocery store, bank, etc. We fell behind schedule fast--dinner was late, as was bedtime. I think it is easy to appreciate your spouse most of the time, so long as you don't choose to be blind, but when you experience being a single parent, even if only briefly, the needle provides clean entry and exit wounds which prick you to be much more vocal about that appreciation. Thank you Heather, love of my life, for everything you do, I'm sorry for the times I'm too blind to notice all that you do for us.

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: 01/03/2013 - Weigh-In-Gate

(01/03/2013, Thursday) The transition from PICU to the floor is always rough, and the first 12 hours was textbook lousy. Through the night Evie's blood pressure was acting up (irrespective of the medication that should keep it in check). Unlike downstairs in PICU where they leave a cuff on and check it automatically at a pre-defined interval, here on the regular floor they do it manually. That means they woke up Evie every hour. Sometimes 15 minutes later they would give her additional medication, or when her blood sugars were checked, she'd also get an insulin shot.

I was fairly exhausted, and slept through many of these checks as I wasn't the one getting pricked, or asked to sit up, or whatever. Sometime between 0400 and 0500, the nurse's assistant came in to weigh Evie. Weighing her is important as it is one of the factors that they use to determine how much fluid they need to remove via dialysis--I was not awake at this time as I had set my alarm for early morning (0700) dialysis where we weigh her twice (before and after) every time we go.

At any rate, I have a fuzzy/groggy perception of what happened next as I awoke afterwards to the sound of Evie, back in bed, crying--They had Evie attempt to stand at the scale without assistance. Without digressing into a lengthy rant, let me say, that was ludicrous. At the time, I thought she was crying due to the general Guantanamo bay approach that hospitals seem to have toward their patients when it comes to sleep deprivation. Who wakes up a kid who is finally well enough to leave ICU to weigh them before the crack of dawn? I don't mean to be rude, but is common sense so uncommon? I could find any number of people who live in poverty who haven't been able to benefit from so-called higher learning that would agree with me that such a practice makes no sense.

But consider Evie. She hasn't been out of bed moving on her own power in nearly six weeks. If that weren't enough, she is genetically predisposed (Osteogenesis Imperfecta, Type 4) to bone fractures. Given all that, imagine my irritation. She was woken up at 0630 by another insulin shot, so we gave up on sleeping, since the transportation folks were due to arrive at 0700. While we were at dialysis, one of her nephrologists came by, and she happened to be the first person I'd seen that morning that I thought would do something about it, so I voiced my concerns (perhaps a bit too animatedly) in a not so amiable fashion.

Evie was able to sleep for about an hour or so during dialysis and they were able to remove yet another full liter of fluid. We did a bit of homework (first time she's felt well enough to do any), and then enjoyed lunch (more beef broth, jello, and apple juice.) After that she was at the hospital school for an hour working on reading and vocabulary.

Shortly after that, we were talking, and Evie recounted the tale and informed me of details I was unaware of regarding what I'll now call "Weigh-In Gate". It turns out that the nurse's assistant had instructed her to stand up at the scale on her own. She'd told them she didn't have the strength to do it. They'd replied "C'mon, you can do it, just try." After additional coaxing, she did try.

She 
        fell 
               down.

Now mind you, I was not awake at this time, so I can't provide a first-hand account. However, I have no reason whatsoever to doubt Evie's word. It is possible that the nurse's assistant was actually helping her in some fashion (I doubt in her groggy state that she would have scooted to the edge of the bed herself, much less step off) but regardless, it sounds as though she fell down (she mentioned something about ending up in a squatting/kneeling position.) If I had been less than amiable when I spoke to her doctor about this event, at this point, I was incensed. Gratefully, physical damage (to Evie) does not appear to have occurred--but it certainly has taken an emotional/mental toll on the poor girl.

Her dance card throughout the rest of the day continued to burst at the seams. She spent time with a physical therapist (tearing up at the suggestion that they practice standing.) We also went to the playroom, and just hung out and worked on crafts--she's been enjoying a weaving loom, (and quickly exhausted her raw material supply.) We also made a little bead animal dog for a boy a few rooms down the hall from us who was celebrating his birthday, and delivered it to him later on in the evening.

Later we spent time with the recreational therapists who had Evie play doctor, to include giving the stuffed animal she dubbed "Miss Hippo" an IV, listening for the heartbeat, performing blood sugar checks, giving it an insulin shot, etc.

When we finally got back to our room, we found out that around 1800 that we'd been given the green-light to change rooms again. (While Heather and the kids were here, it became clear that there wasn't quite enough room for her brother's stroller, Evie's wheelchair, all the people, etc.) The new room is about 30% bigger, and it will be much nicer for family visits on Saturdays. So I spent the rest of the night unpacking everything, to include organizing everything and figuring out what we could send home, even if only temporarily. We got to bed around 2300.

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.