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: 01/09/2013 - Light, Dry, and Tired

(01/09/2013, Wednesday) 0715 dialysis. Brutal. Don't get me wrong, 0715 isn't that early, unless you're eight, unwell, and aren't able to go to bed as early as you would at home. (The bright lights, noises, and occasional needle pricks in the middle of the night don't help either). As an aside, we have given up on bothering to discover what they send for Evie's dialysis day breakfast tray. Today Evie slept through dialysis in its entirety. She lost another 1.3 liters of fluid,for a total of 3.8 liters removed in 3 days. Evie went from 49lbs to 43.5 lbs -- this is a crazy drop for anyone, but over a 10% reduction in weight for her. She came back to the room, ate breakfast, and slept through school. Evie enjoyed a hamburger for lunch (1600) and enjoyed watching Disney's Brave with her mom before she left. Evie and I ended the night by her taking a real bath for the first time in six weeks (well, sitting in inches of water anyway) which proved to be devilishly difficult given the number of things that were not allowed to be wet.

On the Homefront: Prior to making it to the hospital for the switch, Evie's little brother & I ran errands returning Christmas presents and exchanging one of of Evie's at a few stores and then we drove to the hospital so I could trade places with Heather.

Pony Royale "Brooke"

We got there later than I wanted to, and Heather left even later than we'd planned. Gratefully one of our fantastic neighbors was able to take care of the other kids, and made dinner for them (and Heather). I don't know what we'd be doing without the help of so many who are picking up our slack.

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: 01/08/2013 - The Deal

(01/08/2013, Tuesday) Evie slept till 1000. They altered her schedule so that blood sugar checks occur before meals, bedtime, and 0200. They went to dialysis at 1530, where they removed another 1.5 liters of fluid. Crazy! They stopped her TPN (meal in a bag) Tuesday night. She slept well.

On the Homefront: We had planned to switch back again Tuesday, but I still had too many things on my punch list (due to my month long absence from home.) It was mostly stupid stuff, acquiring the right size of air filters for our heating system, troubleshooting what happened to our home computers (Computer A: Bad RAM; Computer B: Fried Motherboard), collecting a water sample to test for lead (in a new house, yeah, awesome), mediating between my insurance carrier and the ambulance billing service, another trip to the post office, etc.

Since I didn't make it back to the hospital as planned, I enlisted the girl's help--when they got home from school, we just worked on cleaning the house for Heather. I put away all the decorations and took down the Christmas lights. A friend from church brought us dinner, which should have made bedtime possible, Evie's older sister had 5 loose teeth which the dentist said all need to come out as soon as possible. The fee quoted by the dentist was exorbitant, so I made her a deal: If she could get the teeth out on her own by her birthday, we'd take a family trip to Great Wolf Lodge. (Cheaper than the dentist, and much more fun for the girls.) So we spent time expediting the most loose one. What may be ready for the dentist to pull takes a bit more preparation for the home remedy, in this case it took us about 3 hours of twisting and torquing, but we got one.

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: 01/05/2013 - Hospital Hijinks

(01/05/2013, Saturday) Saturday kicked off about as well as you can expect a dialysis day to go, which is to say not too smoothly. Here's a picture of the breakfast that was delivered (we aren't able to choose what comes for breakfast on dialysis days due to the early hour.)

As a reminder, we're on a "Low fat, Low Sugar, Low Salt, Kidney Friendly, Soft Diet". Keep in mind that this is for breakfast. What we have here is:

• Grilled cheese sandwich
• Rold Gold Pretzels
• Banana
• Vanilla cupcake with sugar cream frosting

Evie is allowed to eat: Nothing pictured. That's right. She can't eat the grilled cheese sandwich (even if she enjoyed those for breakfast... c'mon now, who doesn't?) because of the cheese (the grease/fat is bad too.) No pretzels, too much salt, too hard. No banana -- Potassium is a no-no for those with punked kidneys. The vanilla cupcake isn't exactly what I'd call low sugar. I tell you what, if what we're going through is ever made into a movie, they'll have to alter the facts to make it more believable.

So after skipping breakfast, Evie tried to sleep through dialysis for 4 hours. She was moderately successful. Once we got back to the room she enjoyed the early lunch that I was able to order (peaches, yogurt, etc.) After that it was time for a sponge bath, and washing her hair. Luckily the nurse's assistant came and rescued me because I was in a bit in over my head. Shortly after that Heather and the kids were able to come visit.

We hung out in the playroom--the girls worked on craft projects with the sorority girls that volunteer on Saturdays--meanwhile, her little brother and I ran in circles around the room. Good times.

Afterwords Evie had another test, this one checking to make sure she didn't have any blood clots. She doesn't! While she was gone, I went through the massive headache to order her dinner. The doctors had changed the type of diet restrictions she was on--it was totally laughable, I couldn't order anything. It was even more precious because the doctor had specifically told me to order her peanut butter and beans/legumes to help her up her phosphorus... and both were blacklisted given our dietary restrictions. Epic. Once we completed those shenanigans, we did laps around the floor with a red wagon while we waited for Evie to get back.

Upon her return, we opened a package that the Lone Peak Lady Knight's Volleyball Team sent Evie -- it had arrived some time ago, but we hadn't managed to bring it to the hospital to open it until Saturday. It was full of all kinds of goodies for Evie, and her siblings. The thoughtfulness and generosity was simply staggering. I suppose it was a combination of human kindness, and sheer love that they have for my sister--and by extension us.

Shortly after that, the kids and I drove home. We got home at about 2200. First thing I saw? A big envelope from our health insurance provider stating that they wanted our permission to give us an individual case manager and specialized coverage due to "a catastrophic life event". Not sure how I feel about the label, or what they're proposing.

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.