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: 01/12/2013 - Family Play Time

(01/12/2013, Saturday) This morning we slept in until around 1000, and then we had breakfast (whole-oat oatmeal with craisins), then we did more in room PT, this time, just encouraging Evie to scoot from one end of her hospital bed to the other each time she passed a level on Unblock me (a block moving app, similar to the game "Rush Hour") She did this until she got tired from moving, then she played her My Little Pony app for a couple hours.

Evie fell asleep about 30 minutes before Heather and the other kids were due to arrive, so I met them downstairs, took the kids to the playroom, and Heather just hung out in Evie's room for not quite an hour, at which point she woke Evie up so she wouldn't miss her chance to play, as the playroom closes at 1600. Evie enjoyed playing on the floor with her little brother, and he was thrilled to be able to play with her and get so close. I entertained the other two while we played and made a giant wood block structure:

Afterwords we went back to the room, and the recreational therapist brought us everything we needed to make Vanilla Ice Cream by rolling around a ball on the floor to each other. It was messy fun, and we wished we had something other than a plastic cereal spoon and plastic knife to get it out with when we were done, but it turned out pretty good.

At that point I should have gone home, but we had a brief family council (prompted by Evie) and after hearing everyone's thoughts on the matter, we decided it would be best if I stayed here. She misses her mother, but she is less stressed/anxious when I am here I guess. I miss the other kids, but at least I had a few days with them last week, even if we were mostly doing chores together when I was home.

Most of all, I think the lack of time Heather and I have had to spend hanging out together, even to do something as rudimentary as talking about what to eat for dinner is taking its toll. Don't get me wrong, we're grateful for phones and Skype, as well as the chance to see each other, but it is still rough. Not quite sure what to do about that, and it is looking like life won't settle for a while yet.

In the later evening Evie ate her dinner. Unfortunately, she promptly vomited it back up. I think this one was my fault, I was trying to make sure she ate enough, and I think she was trying to make me happy, and I think her shrunken tummy got overstretched.

Another downer was that the cough she's had since the day she left Pediatric ICU has become more and more pronounced. Luckily, it isn't particularly severe, but like bad hiccups, you can't make it stop when you want it to. She also started to complain of chest pain. She'd been disconnected from all monitoring/lead lines, and when we hooked her back up before bed, her oxygenation rate was low, hovering around 89%. So she went back on oxygen, this time though only at 0.4 liters, so it isn't severe, just not the trend I wanted to start. Due to the chest pain, we had a late night in-room chest x-ray, but initial feedback is that nothing looks particularly interesting. She is not sleeping particularly 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.

One Year Ago Today: 01/10/2013 - Baby Steps Across the Room

(01/10/2013, Thursday) Today was a non-dialysis day for Evie, so we slept in until nearly 1000. After that, it was a non-stop stream of doctors, nurses, physical therapists, nutritionist, child psychologists, etc.

As rough as it is transitioning to home life with a bit of work peppered in there, transitioning back to hospital living was more tough. The doctors have been used to me being a constant figure that is fairly up-to-speed on things, and after having been gone for four days, I no longer had a good bead on where things were at. It was like high school physics class all over again:

Challenge: "What (insert random question here I should know the answer to)?"
Response: "I don't know."

Since Evie's TPN was turned off a few days prior, there is now concern that she isn't getting sufficient liquid or nutrition, so Thursday -- Saturday it is my task to document everything she eats and drinks. The conversation with her nutritionist was more confusing than it was helpful--I *SO* wish I'd followed through with the impulse to make the nutritionist order Evie's brunch that day. Any attempt to acquire "appropriate" food by ordering through hospital food services is laughable.

PT helped Evie replicate her success from a few days prior, and she crossed the room using her walker twice! The first time she cried. The second time her joints had warmed up a little, and although she was clearly pained, she gritted her teeth, and got it done without a peep.

Now that we aren't in Pediatric ICU, we don't often get to have the x-ray come to bedside, so we made a trip down to the basement to take a few good shots of her chest (checking on her lungs and the fluid which surrounds her heart.) After that, we came upstairs and removed her PICC line, which had been in long enough that there were worries of possible infection. With all that going on, we didn't make it to school, but it turns out it may not have happened anyhow, as all but one of the teachers were out with the flu (and they'd all had flu shots--so encouraging!)

The biggest news of the day is that she has crossed the line of demarcation and is no longer insulin dependent. Shutting off her TPN seems to have resolved the matter. The rest of the day was uneventful, but due to a late nap we didn't manage to get to bed until after 2200.

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: 01/06/2013 - Daddy's Home

(01/06/2013, Sunday) At the hospital, Evie had a productive physical therapy session, and a relatively quiet day. She didn't have a great sleep as she has picked up a dry cough. So far it hasn't caused any detectable change in her ability to breathe, but it has definitely caused her angst. The rest of her day was pretty good, but her appetite sounds as though it has tapered off.

Meanwhile, at home we have church at 1pm so it was mostly a lazy morning -- I was about to give myself a shave when I decided it was high-time to help Evie's little brother stop looking like a girl.

It was nice to go to church, although it felt odd not to have Heather or Evie with us. Wrangling the little guy is particularly difficult, especially with the afternoon church schedule.

I've decided that being at home makes our predicament a bit more real than living at the hospital, as that seems more temporary somehow. That probably doesn't really do a good job of explaining what I'm feeling, but I don't quite know how else to put it into words.

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.

One Year Ago Today: 12/31/2012 - The Difference a Day Makes

(12/31/2012, Monday) Evie slept well last night, but her sleep was cut short this morning by the sliding door of her room coming off the track. Between me trying to fix it with my bare hands, and the maintenance guy coming to fix it with the necessary tools, she woke up too early because of the noise.

By 0800, we began plasmapheresis, which was done around 1100. During the course of which, I had a chance to have a lengthy discussion with one of her nephrologists. Discussion highlights include:

• After today, no more plasmapheresis (unless something changes, again.)
• No dialysis today.
• Convert the continuous Nexium drip to a twice a day IV (Nexium doesn't just help with acid reflux -- the magic purple pill also helps your GI tract heal itself.
• No more assisted breathing -- we're back on room air :-)
• It is the belief of the nephrologist that Evie is considered most certainly to be in the HUS crowd, not aHUS... we've done a few things (primarily the Lamborghini Juice and Plasmapheresis) which are typically reserved for an aHUS patient, but they have been used elsewhere (namely Germany) to great effect for regular old HUS folk.
• It is also the belief of the nephrologist that Evie's GI bleed is also par for the course for a patient with a severe case of HUS and she believes that Evie clearly falls into this category.
• We're still in "Wait and See" mode when it comes to her GI bleeding but the Nephrologist feels like if we still haven't seen anything (bloody stool-wise) by the time dialysis is done tomorrow, we may be able to move back to the regular floor (out of PICU) tomorrow!!!
• Green light for clear liquids today, in very small quantities.
• We again discussed how very badly Evie needs time with the Physical Therapists (because of her OI.)
• We discussed how long Evie will likely require dialysis. The nephrologist is hopeful that she may not require dialysis, and or a transplant later in life, but hangs to the hope that instead enough kidney function will return that she could filter her own blood and produce urine. Even if that becomes reality she will likely spend the rest of her life taking medication for regulating blood pressure and other things that her kidneys will likely not be capable of doing any more.
• We also discussed the possibility of several more weeks in the hospital, or potentially living somewhere nearby and coming to the hospital 3 times a week. (Essentially trying to decide between doing peritoneal dialysis, and staying with standard hemodialysis.)

The rest of our day consisted of working with physical therapists and recreational therapists. We got to put her in a wheelchair and take her on a walk today before Heather had to leave. We had to stay in PICU though, and she is itching to make it back to the playroom. She enjoyed the food she got to eat, but struggles with the limitations of type and quantity. It is really important that we don't go too fast though, as too much or too complex of food in her belly could re-aggravate both her pancreatitis and possibly more GI bleeding.

The gastroenterologists and pediatric surgeons seem to still be interested in performing a colonoscopy to take a look at things that yesterday's procedure couldn't view... we'll see if and when that happens. It has been 24 hours since we had a bloody stool, and at the last check of her hemoglobin and hematacrit, both were stable (and had raised slightly) compared to yesterday after surgery -- so everything is looking up. Let's all hope it isn't another peak in the rollercoaster, but rather just another vista toward the top of the mountain.

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.