One Year Ago Today: 01/30-31/2013 - The Exclusive 8 & Under Medicare Crowd

(01/30-31/2013, Wednesday & Thursday) Evie:

• Is not consuming enough calories -- she does not eat without external motivation.
• Does not require oxygen (has not had enough fluid intake to challenge this.)
• Has had blood sugars of 160+ since we started keeping track again.
• Continues to be exhausted because of:
  • Dialysis itself
  • The build-up of toxins in the bloodstream between dialysis appointments
  • Side effects of her medication
  • Glucose/insulin imbalance
  • Insufficient caloric intake
  • Lack of deep restful sleep
  • She's sick.
• Has been officially declared to have Stage 5 Kidney Failure (you guessed it, there are only 5 stages.) I've been told that on the plus side, this means that at the ripe age of 8, she qualifies for Medicare. 
  
  

  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: 01/29/2013 - 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: 01/28/2013 - 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: 01/27/2013 - Nearly speechless

(01/27/2013, Sunday)

On the Home-front -- More strep-throat, so no visitors, no relief, no reinforcements. Bummer.

Evie weighed 18.1 kilograms today, further illustrating how small her food/fluid intake was during the 48 hours since she was weighed last. She didn't talk much at all until it was time for sleep (not too uncommon, I've been told that a feeding tube makes speaking unpleasant.) I can summarize our nocturnal discussion in a sad sentence: She no longer views the hospital as a place of healing, but rather in her view it has become a place of torture which she cannot seem to escape. I continue to try to console her, but her perspective comes from sad experience, not a flair for the dramatic.

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: 01/26/2013 - NG Tube The 2nd Step Closer to Home

(01/26/2013, Saturday) Last night was rough. The peak occurred around 0200 when we suffered a bout of very liquidous diarrhea which necessitated the lights being turned on and a partial bedding change. It was likely more traumatizing to me than her as it brought back memories of roughly nine weeks ago when my otherwise healthy child began having similar issues, namely vomiting, loss of appetite, and violent diarrhea. I do not believe she is having a recurrence, but with how hard the last few days have been, I'm not quite in the stoic place that I like to find myself in times of trial.

I don't have much to provide for an update today. My Evie bear was awake for about four hours total today. She didn't wake up until sometime after 1100. Meanwhile, gratefully, a different nephrologist (kidney doctor) had come on shift. I spent over an hour recounting the events of the last week since she'd been here. Then Heather woke up and we re-hashed a few of the more important topics for nearly another hour. My heart flows with gratitude for this doctor who actually wanted to hear me out.

Once Evie was awake, she ate a half cup of marshmallow mateys and declared she was full. She had a nap for a few hours, and when she woke up, we placed an NG tube (feeding tube). (You're welcome to hit YouTube if you want to see what its like--if watching it makes you queezy, just imagine experiencing it personally!) Not surprisingly Evie didn't enjoy it, but she held very still, and it was done and over before she had a chance to get worked up. She ate a popsicle and was determined to make it to the playroom for a few minutes, in spite of near exhaustion. The three of us played Qwirkle, then came back to the room.

Heather then left to reclaim the rest of our kids from neighbors, and church members homes. So grateful for people who step in to help us stay afloat. Heather had driven up Friday morning and planned to go home that afternoon, but the procedure had run long, and it snowed here so the road home was a parking lot, so she stayed. (Well, they call it snow here -- it was cold, and there were ice particles in the air.) I don't know if Evie was awake enough of the time to appreciate having both of us here for a whole day and a half, but it meant the world to me--and left me in a better place.

Evie ate another popsicle while I read her part one of "The Ordinary Princess", and then promptly fell asleep. Her feeding tube has been running since around 1730. It's now 2030 and I'm not sure if I should try to wake her up, or let her continue to sleep. Between the sore throat, the sore stomach, and the gauntlet that was the last three days, I think I'll vote for sleep. Here's to hoping that when tomorrow morning dawns, she'll again be ready to face it with determination.

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: 01/25/2013 - One Step Closer to Home!

(01/25/2013, Friday) Due to her scheduled procedure (to add a peritoneal dialysis catheter), Evie did not eat or drink after her late dinner last night, around 2100. We had dialysis from 0700-1100. She slept through most of it. They filtered her blood, and removed a whopping 0.1 liters of fluid, because her "wet weight" (her weight prior to dialysis) today was exactly the same as yesterday's "dry weight" -- This is due to her schedule yesterday precluding her from having an opportunity to eat, drink, or sleep whether she desired to or not. My sister asked me, how I was doing today. My response? Things are definitely better than yesterday. I'm not motivated nor prepared to be arrested for assault/battery today, so clearly I'm in a much better place mentally. Heather arrived as dialysis completed. Evie began watching something on Disney Channel while Heather and I had a meeting with "The team" to discuss "the plan" and talk about "the issues". Shortly after the meeting was over, it was time to go down for the procedure. We spent a fair amount of time waiting, but eventually at 1345 or so, the anesthesiologist gave her medicine that made her sleepy and giggly and took her away. At nearly 1600 we were told that the procedure went well, but we had to wait for her to wake up so that we could visit her one at a time in the recovery room. The procedure and recovery was supposed to take about an hour from start to finish. It took more than two. Everything went well, but there was a larger than expected bit of tissue which had to be removed that was essentially just a strip of fat (hard to imagine she still had any.) I'm sure it had a purpose, but in weighed priorities, it lost, and now she doesn't have it. I don't know if it'll grow back. She's got a fair amount of abdominal pain, but it was all to be expected, given the type of surgery it was. She's got a baseball style set of 8 stitches covering the inch or so incision which will be taken out in a couple weeks. (For orientation purposes, you can't see Evie's belly button in the picture below, but it is just out of frame past the top right hand corner.) Eating is a chore. Evie was not hungry when we came back to the room, so we let her sleep. Once dinner came (around 1945) she threw up--three bites into her first meal of the day--admittedly I provoked her, being agitated that she was not making any effort to eat. Afterwards we had a good discussion and we hugged it out. The trouble is by tomorrow, she'll likely have forgotten her new resolve, and the cycle will repeat. At least for now she's eating the rest of her dinner well (on her own). Its a pity she threw up her medicine, but not the end of the world--they re-dosed her.

At this point, they've thrown the kidney patient diet (low phosphorus, low potassium, low sodium, low sugar) out the window in favor of trying to get her to eat *anything*. Trouble is, dairy is bad for her as it contains things her kidneys can't process on a molecular level, so dialysis can't fix it. But she needs Calcium. But she can't eat many other (non-dairy) calcium rich foods. Once she's fully recovered, meal planning and nutrition for her are going to be brutal. We're crossing our fingers that Evie doesn't develop gluten allergy too, because at that point, just about the only thing she'd have left to eat is straight protein.

We'll be allowed to go home when

• The cause of her diarrhea is diagnosed, and/or it goes away
• We're able to stabilize her from a daily caloric/nutrition requirement standpoint
• We're able to determine once and for all whether she is diabetic
• We're confident that her oxygenation issues have been dealt with

I think that is everything. That could all happen this week. We'll be driving up here to check in and out of the hospital every other day until her peritoneal access is ready for prime time, about mid-February, at which point we'll be up here for about a week for training. Ideally that means we will be doing home dialysis prior to the three month anniversary of when Evie became sick.

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: 01/24/2013 - Rough Day

(01/24/2013, Thursday)

Today was hell.

I'm not going to drag you all through the emotional cesspool that was our day--rather I'll just shift perspective a bit--Evie:

• Isn't paralyzed.
• Appears to have no lasting heart issues.
• Has no brain damage. (Probably unnecessarily tying things in here, but she's not a Ute fan or a Pittsburgh fan.)
• Is more like Cinderella than her stepsisters Drizella and Anastasia (she's kind, caring, and helpful.)
• In spite of everything, she still trusts me.
• More importantly, she still trusts her Heavenly Father.
• Has not given up.

So today was okay.


Evie:

• Is not on a feeding tube, and is not consuming nor retaining enough calories.
• Currently weighs 17.9 kilograms, or 39.5 lbs.
• Will endure her 3rd day in a row of dialysis from 0700-1100 Friday, with the current total of this streak being 2.2 Liters removed.
• Is not currently on oxygen, as the theory is that if we get her and keep her "dry enough" she won't need it.
• Is physically exhausted, and would sleep the majority of the day if left undisturbed.
• Has no appetite. (In spite of the appetite stimulant she's been receiving, which has a side-affect of potentially causing "night-terrors")
• Will have surgery tomorrow after dialysis (most likely around noon) for peritoneal dialysis access.

Things to Hope and/or Pray for

• That she regains her appetite, and her ability to keep her food down.
• That we'll adequately resolve the oxygenation/breathing issues.
• Better doctor/patient family relations/communication
• Penetration of the bureaucracy.

I realize that my first set of bullets may have concerned you, so please, let me clarify: I was trying to get myself in a more positive mindset. The first set of bullets are all things that are not an issue, nor have they been. Nothing traumatic brain/heart/nerve system happened... this was just my poorly written way of saying, "We'll, at least we don't have these problems."

Make sense? Sorry if I gave you undue cause for concern.

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: 01/21/2013 - Recognizing the Realities of End Stage Renal Disease

(01/21/2013, Monday)

DISCLAIMER: This post is not intended to be a pity party (I certainly hope it doesn't seem like one.) Rather, it is just my thoughts and shifting perspective.)

Evie weighed 18.1 kilograms (39.9 lbs) at the end of today's dialysis, wherein, as I am told they removed 1.5 liters of fluid (12 hours previously that had removed 0.8). I don't think I have to tell you if you've been reading any of these updates that this isn't good. That being said, she feels much better having had all that fluid gone, and was decidedly vivacious tonight as we watched a movie.

I keep telling myself if we can just overcome the current struggles, the rest of this will be easy. I do the same thing when I exercise (at least I used to, back in the day when I exercised) -- sometimes you know that you are effectively lying to yourself... "Just 2 more minutes at 8 mph, then it'll be easy."--that sort of thing. Sometimes you know your plan is to increase the elevation, or to crank it up another 0.5 mph, but you convince yourself that things will be better in two minutes anyway. This whole ordeal has been a bit like that, meanwhile focusing on the end target the whole time. "We just need to fix _________ and then within a few days we should be able to go home, and then things will become more normal."--I know that it won't be normal, but more normal is acceptable.

However, today was a bit hard with its heart aching, gut wrenching, bone crushing (loss) moments. Like watching a slideshow of pictures from Evie's life so far, and seeing:

• A: The number of pictures that involved hospitalization (related to her Osteogenesis Imperfecta)
• B: The number of pictures she was having fun in water (lakes, rivers, ocean) that she is not allowed to be in any more.

I am adept at handling item A. I've known her since she was in the belly forming, and I knew her journey would not be light on doctor and hospital visits. But seeing pictures of her enjoying the water, and knowing that without additional divine intervention she simply can't do it anymore hurts. It doesn't help that I spent time talking with one of the more knowledgeable dialysis nurses Sunday night / Monday morning about the potential riskiness of swimming even in treated water.


Sad.


But this is a new limitation that I've known about for weeks, and am mostly adjusted to. Evie and I talked about it at length over a month ago.

Although I tried my best to help her stave off muscle and bone loss, it is clear that it has occurred, and that it is significant. She is emaciated, and dwindling. She will likely have a feeding tube placed before Tuesday is over. I guess I've been so worried about the effects of long term immobilization (today marks 8 weeks of illness), that I hadn't considered the impact of kidney failure itself. In the last day or so, I've realized just how damaging kidney failure is to bones. Bad news. If Evie were a camel, she'd need to carry something lighter than straw.

The thing that really has me feeling as though I have a pit of despair in my stomach though was having my wife kindly share with me knowledge that I just hadn't been tracking. Here's an excerpt from "CURRENT Diagnosis & Treatment Nephrology & Hypertension", Chapter 55 on Pregnancy & Renal Disease:

If you'd like more information, choose your own adventure:

• Light Reading: The National Kidney Foundation
• Heavy Reading: UpToDate

Somehow, I'd missed this, although I'm sure on the fringe it may have been casually discussed... In my mind it was a lingering wonder... "How will kidney failure impact her adult life?" I've still been in triage mode, still trying to endure 8 mph. Grant you, some may say that I am either naive or hopefully optimistic to simply assume that adult life is guaranteed. Fair enough, call me either. I operate under more of a guise of a plan than a real plan... As I struggle through our run, regardless of how difficult this information is, it doesn't change blessings which are hers to claim. God has a plan, and that is all that matters. We'll be okay so long as we pay attention and follow it.

So I keep my hand to the plow. No need to look over my shoulder--I must cut a straight row. I focus my eyes on the eternal target, and press forward.

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: 01/20/2013 - Urgent Late Night Dialysis Session

(01/20/2013, Sunday) [Today's update was originally multiple emails, thus the timestamps.]

09:32PM Evie's ability to oxygenate her blood deteriorated steadily throughout the day -- if she gets much worse, she will be moved back to Pediatric ICU. She had an echocardiogram and an x-ray. Both indicate that she has fluid in her lungs again.

They have called dialysis nurses back to the hospital to facilitate Evie having dialysis tonight, starting at about 2300 or so -- she'll simultaneously get a blood transfusion in attempt to get more hemoglobin into her (the transportation mechanism for oxygen in the bloodstream.)           

09:45PM Evie's doctor just arrived: They will not be truly dialyzing her tonight, but rather it will strictly be a fluid pull.   Evie will have dialysis as scheduled tomorrow morning at 0900ish. The transfusion will occur in tandem with tomorrow morning's dialysis.

11:00PM Evie's hooked up.   She'll be here for 1.5 hours, the target removal is around 500-1000 ml's.   The bumpy bed ride down to the dialysis center stressed her out, and her oxygen went further down... Evie ended up in a coughing fit and lost her dinner. :-(

12:43AM We're done, just waiting for transport back to the room... they removed 800 ml's. Evie watched Curious George, and now she has passed out. Waking her up to feed her prior to dialysis in hopes of catching up on what she lost tonight will be difficult, if not entirely fruitless, but I have to try.

---

Epilogue: Evie only requires 1 liter of oxygen, as opposed to 3 when she started. We'll see what tomorrow brings. In other news, Larry (Evie's equivalent to Christopher Robin's Pooh Bear) took the brunt of the blast when Evie lost her dinner, so once Evie was stabilized and connected for the fluid pull from the dialysis machine, I went about damage control.

Unfortunately for Larry (and me since I have laundry I need to do here) this is what I found in the only patient/family laundry area I know of in this complex:

So I went about washing Larry in the sink by hand.

Gratefully Larry seems to have made a full recovery.

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: 01/19/2013 - Probably Need a Transplant

(01/19/2013, Saturday) Early this morning I met with one of Evie's nephrologists (kidney doctor) and conferenced Heather in via Skype. We talked through several of the issues (having the surgery for a peritoneal dialysis catheter, possibly placing an NG-Tube, etc), and we officially discussed kidney transplant for the first time. Wa-hoo.

Two hours later, the family came to visit today although without Evie's younger sister (who was well enough to stay at a friend's house, but certainly not germ-free enough that it would be worth it to risk having her near Evie.) Having the rest of the family visit did Evie a lot of good today. Evie also enjoyed (she ate!) the homemade food that mom brought (Stroganoff & Chocolate Peanut Butter Chip Cookies).

Before Evie became ill, she was 44 lbs. She was weighed minutes before she had her seizure the day she arrived here, 7 weeks ago Sunday afternoon, and weighed 40 lbs. I'd say Evie doesn't have much more weight to lose, even though she is heavier (41.4 lbs.) than she was when she checked in. This is because when she checked in, she was severely dehydrated, but not enough time had passed that muscle or bone loss could have played much of a factor. If Evie dips below 40 lbs now, it would most certainly be the result of muscle and bone loss, not dehydration.

My last post probably didn't make much sense because I tend to be writing when I'm overtired. I do think I pushed her too hard doing homework on Wednesday, and doing physical therapy things on Thursday. The whole eating thing is stressful, and while I had good intentions, the conversations she and I had on Thursday night and Friday morning did nothing to make it less hard, if anything, I did a brilliant job of traumatizing her, which left both of us in a bad place on Friday.

Every decision made regarding her care is difficult. We don't want Evie to be insulin dependent, so we don't give her the one thing that has helped her effusion shrink in the past (steroid). We don't want to hurt her kidneys (which according to the test have no significant chance of recovery) so we don't give her ibuprofen, which may or may not help with the effusion. They started giving her aspirin, because neither of the other options sounded good -- but oh, yeah, this is the girl who needed half of her blood swapped out in 24 hours, so thinning her blood doesn't quite seem brilliant, does it? So today they killed the Aspirin, and went back to Ibuprofen, but a lower dose. Is that wise? It depends on if you believe in miracles. If you think her kidneys still have a chance of recovering, it is a dumb move. I'd argue though that if you have the faith to ask for functioning kidneys, surely that can overcome a little Vitamin I.

Last but not least, I'll share a couple snapshots of Evie's journey thus far. The time lapse is almost exactly 8 years. She's 10 months old in the first photo, and 3 months shy of 9 in the second.

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: 01/17-18/2013 - Pesky Pericardial-Effusion and PT: We Done Overdid It.

(01/17-18/2013, Thursday & Friday)
I know it wouldn't work, but the logical/sensible side of me checked out a long time ago. Have you ever had the fleeting thought that if you did everything backwards, perhaps you could have 20/20 foresight instead of hindsight? At 0200, it seems like a perfectly credible idea, just sayin'.

The last two days have been rough. Evie pushed herself rather hard while she was feeling well, and I didn't stop her. If anything, I was Mr. Encouragement coupled with Uncle Instigator. Thursday morning I let her use her walker to walk much too far. It seemed like amazing progress at the time -- Evie was in a great mood, and thanks to "Vitamin I" (Ibuprofen) she was feeling better than she had in weeks.

Here she is feeling totally chipper in the playroom.

The purpose of the Vitamin I is to reduce swelling -- In Evie's case we were hoping it would cause a decrease in the size of the effusion (liquid) surrounding her heart. Vitamin I also does wonders for joint pain which Evie has always had plenty of, but has typically just dealt with it in the past--that pain is much more severe during this hospitalization because of how long she's been immobile. The downside of Vitamin I is that it is rough on your kidneys, even when you are healthy. (So I s'pose I need to change my ways, and stop considering it as a post workout vitamin.) They'd hoped it wouldn't impact Evie much, but while it made her feel like a million bucks, they say her urine production tanked, so she was only on it for a couple days.

The next alternative would have been to give her a steroid, but that would have made Evie insulin dependent again, which we'd desperately like to avoid. The only other alternative I've heard is to try to drain the effusion, but it is in a difficult area and they don't want to risk that as long as it isn't affecting her heart's ability to squeeze. Unfortunately, the effusion does have a rather adverse impact on Evie's ability to breathe.  The fallout from quitting the Vitam** * Ibuprofen is that she'd gotten used to not having joint pain, and now it is back with a vengeance thanks to the all the exercise she got while she was feeling well.

A quick dash of good news: Our ex-girlfriend the cough moved on to other fish in the sea, and we haven't heard or seen her in two days -- here's to hoping that she doesn't come back for anything she may have left behind.

More good news: I think the flu has moved on from the homefront too. Bad news: it sounds as though Evie's younger sister caught something else while at school on Friday. What I don't get is how these things manage to spread in NC -- it isn't -15 outside, it hits the 60's and 70's more frequently than I expect it to, so how come school is such a disease factory? Just sayin'.

---

******At this point I fell asleep at the keyboard, so I apologize for the delayed update, but at least I didn't keep the several pages worth of mistakenly pressed keys*****

---

And I'm back. So Evie was on oxygen prior to dialysis Friday. Lately dialysis has given her a reprieve from breathing/oxygenation issues for about a day and a half, and then the night before dialysis, she requires oxygen. Friday was different though. She had dialysis Friday afternoon--they removed 800 ml's and finished around 1800. By 2200, she was already having problems breathing and as a result she had to get back on oxygen.

The effusion (liquid) surrounding her heart is causing her to not get enough sleep, which impacts the rest of her recovery. She sleeps until 1000, and doesn't tend to eat her first meal until 1100. That means she really only eats twice a day. And what she does eat is so far not enough--she is losing more weight. It is very possible that within the next few days she'll have to get a feeding tube.

The current expectation is that we'll be here at the hospital for another two weeks or so. If her urine production isn't able to ramp up, she'll have a peritoneal dialysis access put in.

Evie:

• Had 0.8 liters of fluid removed friday via dialysis
• Is back on oxygen, and requires it 24 hours a day.
• Is cough free
• Sleeping well? No. If I stay awake long enough to watch her, I can see that I was naive to think so.
• Is not getting enough calories in, and is losing weight...     It isn't for lack of trying, last night she had a ¹/₂ a piece of lasagna, ¹/₂ a quesadilla, most of a large piece of cheesecake, and most of a piece of chocolate pie. Problem, she didn't eat much the rest of the day.
• Weighs 18.8 kilograms, or 41.4 pounds
• Is able to move about well short distances with her walker, although at times she's too fatigued to do so. If her food intake doesn't pick up, the exercise will be detrimental as she has no fat to burn, so her body will start robbing what little muscle she has left.

In short, she could use more prayers on her behalf.

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: 01/15/2013 - 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: 01/14/2013 - Hospital Living, A Day in the Life

(01/14/2013, Monday)

Yesterday's Extras

• Another vomiting spell claimed Evie's dinner during the night last night, which was particularly worrisome, given that it was the only meal she really ate much at all yesterday.
• Evie was able to Skype with her long lost best friend from Maryland last night before bed. She read the entirety of a bare-book she'd authored and illustrated over the summer which was based on their friendship. They talked for almost an hour. I think that conversation alone did more to buoy up her spirits than anything else that has happened lately.

Today

0630: Woke up Evie to try to get her to eat breakfast prior to dialysis. Helped her wake up happy by letting her play her My Little Pony app. She ate a quarter portion of oatmeal.

0700: Dialysis begins. During regular dialysis, they removed 0.5 liters of fluid. Then we extended by a half hour, and during the overtime we were no longer filtering the blood so fluid removal was the sole focus. We removed an additional 0.5 liters, for a total of 1.0 liter removed on the day, at which point we conveniently no longer required additional oxygen. Evie once again weighs just over 43 pounds.

1230: Got back to the room to eat breakfast/lunch which had already arrived and was getting cold due to our overtime play in dialysis. Shortly after our arrival, the nurse's assistant (NA) came in to get Evie's stats (blood pressure, temperature, heartrate). Prior to her arrival, I'd had Evie carefully use her walker to move from the bed to the chair to practice walking. The NA initiated the following conversation:

• NA: She needs to get over here and stand on the scale, I need to weigh her right now, and then get her stats.
• ME: She was weighed in dialysis twice. She doesn't need to be weighed again, she just really needs to eat.
• NA: No sir, she needs to walk over here, she has to be weighed here as well and I must get her vitals now also.
  
  (Enter Evie's nutritionist who has come to collect our food intake journal.)
• ME: [EYES BUGGING OUT OF MY HEAD] My child kept virtually no food down yesterday. She has been awake since 0630 this morning, and has eaten next to nothing. She MUST eat now -- leave the room now. There is nothing you need that cannot wait -- you will not weigh her. You will come back later if at all for the other things.
  (Exit NA)
• Nutritionist: [Shocked look on face] I'm glad food is the priority...
• ME: Evie will eat now. Food journal is on the door. Ask me questions while she eats.

1300: School. Dominantly a reading comprehension focus today, as we'd done lots of math during dialysis.

1345: Cardiologist comes by to talk to me about her pericardial effusion (liquid surrounding her heart). The average person has about a teaspoon of fluid, and is a good thing as it helps reduce friction. Evie has roughly 1/3 of a cup surrounding her heart right now. Currently isn't impacting the effectiveness of her heart's squeeze though, so hooray for that.

1400 -- 1600: Playroom: Played a kid's board game whose target audience is sick kids at the hospital -- you spend the whole thing collecting tokens, and sharing your feelings -- good chance to talk through some issues.

1630: Evie makes plans with the recreational therapists to host a movie night in the playroom... after deliberation she selects "The Incredibles"

1645: Pulmonologists (lung doctors) come by to discuss her recent oxygen need, and her cough. They theorize that the cough and oxygen need stemmed from fluid remaining where it shouldn't have been which made sense, given the fact that prior to today's session, no fluid had been removed since last Wednesday.

1705: Another Pulmonologist comes and talks more about it.

1715: Skyping with Grandparents.

1745: Eating -- Grilled Cheese Sandwich (That's right, they're not just for breakfast anymore!, Macaroni & Cheese, Chocolate Chip Cookie... I've been directed to have her eat whatever she'll eat, so long as she keeps it down.

1830: Skyping with her Maryland friend.

1900: Start getting ready for bed.

2100: Light's out--yeah, it took forever tonight.

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: 01/13/2013 - Discharge "Soon" (Whatever that Means)

(01/13/2013, Sunday) Today started off a bit rough due to the lousy sleep, and the flow of doctors that morning brings. By the third time someone with a stethoscope tries to wake you up to tell you "Hey honey, I'm just going to listen." You don't really care that they're only listening, you want them to go away and never come back. Her appetite today is significantly reduced, but I am not fighting it as I don't want another vomiting episode. We had an echocardiogram, the results of which I have not yet heard--which typically means relatively little change in status.

Evie has spent her day enjoying church music, reading a magic treehouse book, and playing various games. I have not yet found a way to coax her into doing PT as her appetite has been nearly non-existent, and her cough doesn't seem to be improving.


The past week's improvements include:

• Back on solid food.
• TPN (dinner in a bag) has been discontinued.
• Removal of PICC line -- only line still in is her dialysis line in her chest--they do blood draws for labs during dialysis now.
• No more blood sugar/insulin needs -- once the TPN stopped (25% of which was dextrose), magically her blood sugar seems to have righted itself.
• Her blood pressure seems is more in the realm of what it should be, dropping from the 140's over 100's to 100-110 range over 65-80's.

Between questioning the Nephrologist (kidney doctor) and her dialysis nurses, I've been told that she is quickly approaching being stable enough that she will be well enough for discharge "soon". (Such a relative term!)

Prior to discharge, she'll undergo a procedure to get an access/catheter put in for Peritoneal Dialysis. Unfortunately, the latest bit of information I have learned is that the standard wait time for its use is 4-6 weeks after surgery so that it can heal to the point it is ready for use. So unless we get to start early we'll be driving up here every Monday, Wednesday, and Friday for 4-6 weeks after discharge to have hemodialysis.

So, we are faced with a 1.5 hour drive each way, with 4-5 hours spent here, or we could stay somewhere in Chapel Hill for the next 4-6 weeks (but not the hospital.) Superb. There also remains the peritoneal training that Heather and I are both required to attend for 5 - 10 days at some point before we'll be allowed to do it at home on our own.

I was also informed today that since the hospital dialysis unit is in-patient only, we will have to check in and out each day we are here for dialysis. I have a meeting this week with the social worker to discuss this, as it poses a big problem if they bill the insurance company for it that way. I pay $150 a day to enjoy the hospital with Evie. If it is a continuous stay, that cost is capped. If it is several separate stays, it isn't (until I hit some ridiculously high number for the year.)

Things have most definitely improved, but given how things have gone, it is difficult to shake the "I wonder what will go wrong next" mentality.

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: 01/09/2013 - 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.

One Year Ago Today: 01/04/2013 - Hooray For Soft Foods!

(01/04/2013, Friday) The night was fairly good. Evie vomited in the middle of the night (0300), but that was the only interruption aside from the frequent blood pressure checks due to her blood pressure being higher lately -- it leads one to wonder if her heart can't figure out why all the blood is staying within the circuit now. It makes me think it had gotten used to the "slow leak". We didn't truly get up to face the day until almost 1000. Since dialysis days start so early, it is nice to take a break when we can.

We had lots of visitors today as well. Her nephrologist (kidney doctor) came by first and we talked about her x-ray results (everything is looking better, from lungs to heart) followed by the nurse manager and floor supervisor (who among other things, came by to discuss "weigh-in gate".) We had lunch, and then it was back off to the hospital school for art and math. Afterwords she came back to the room and started to nap, but then they had to check her blood sugar, so the nap ended quite short.

She read through two of her books today and finished her weaving project before her "soft-foods" dinner (we graduated!) which included applesauce, peach slices, beef broth, a dinner roll, and a smoothie. She ate all the broth and the peaches, the rest of it (even the smoothie!) wasn't up to her standard. We spent time with an occupational therapist afterwords, and did some exercises. We had to change the dressing on her PICC line later on this evening, which was a bit traumatic, but other than that, it was a good day. Check out the sunset:

By the Numbers:

• She's required 5 units of insulin on average per day. Still. Worrisome. Blood Sugar range: 97-225.
• Hematocrit: 28.5%, Hemoglobin 10.0, Platelets 122
• Blood Pressure: Range 120/82 -- 139/107 (changing from 2.5g's of medicine twice a day to 5g's once a day.)
  
  
  

  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.