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: 01/20/2013 - 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: 01/16/2013 - 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: 01/14/2013 - 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: 01/09/2013 - 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: 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.