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.

One Year Ago Today: 12/30/2012 - Surgery

(12/30/2012, Sunday) [Horizontal lines indicate separate emails sent on this day.]

0430: Another bloody stool. (If you're wondering what voice inflection to use for the prior sentence, I recommend a thick British accent, a la Michael Caine.)   Over 230 ml's. Her H&H numbers from her 0400 blood draw: hemoglobin 8.7, hematocrit 24.1%. For her age and weight normal/healthy is 11.5 or higher for hemoglobin 35-45% for hematocrit. Her low numbers indicate she's bleeding a fair amount, given all the extra blood she's been given. The next transfusion is imminent--it will start before I can finish writing this.

Someone Evelyn's size has about 83 ml's of blood per kilogram in their body. Assuming she has not become further emaciated, she weighs 21 kilos. That means her body contains a grand total of approximately 1.75 liters of blood. The volume of each transfusion varies, but you can count on each one containing at least 250 milliliters. That means every drop of blood in her body has been replaced 3 times during this hospitalization.  In the past 24 hours she has lost (and had replaced) over 70% of her total blood volume.

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1215: Evie is scheduled for an angiography (and hopefully an embolization) down in the Vascular Interventional Radiology Department. They hope to begin around 1300 eastern.

I think I'm mostly doing a decent job with handing over the things I can't control, and not worrying about them. The real stressor for me has been worrying about the actions I have taken (whether they were right). There have already been several moments today in which I have been rather worried about I have done. Allow me to explain.

0600 is when the plans for the day began to shift. I had a conversation with the attending physician which may have been the catalyst. I brought up the same facts and figures which I have outlined above regarding the number of transfusions compared to her total blood volume, and brought up a few fancy terms I'd learned when it comes to percentage of blood loss. (I understand enough only to be dangerous, but we had a conversation regarding what stage of Hypervolemic Shock her body was in at any given moment, and whether it was responsible to suggest staying the course in the hopes that her body would simply stop bleeding.) It was at that point he decided to make the call to force action--he called gastroenterology, pediatric surgery, vascular interventional radiology, and nephrology and indicated they needed to provide an outline of what each saw as the preferred way forward prior to Evie getting finished with plasmapheresis (in which she obtained her 5th unit of blood in 24 hours).

Three potential courses of action were proposed which I had them also repeat to Heather via Skype.

1. Do nothing, stay the course, hope she stops bleeding.
2. Have the pediatric surgeons cut her open and remove the section of her large intestine that the leak seemed to come from... after which she would require a colostomy bag for while the large intestine healed, and possibly for long term depending on what was removed.
3. Bite the bullet, inject dye which can harm even healthy functioning kidneys so that an angiography could be done in hopes of finding the leak(s) that needed to be embolized (plugged). Best case scenario, a leak would be found, and fixed. Worst case scenario, the leakage could be coming from a diffused area, and option 2 would have to occur anyway.

Immediately after the discussion, I returned to Evie's PICU room, where she had just completed plasmapheresis. She looked, and seemed to feel better than she had in more than a week.That made the decision to go ahead with the procedure (and the associated negative side effects from dye) difficult, as she seemed to be in a much better place, so it was easy for doubt to creep in. (5 units of blood transfused in 24 hours when your body holds only 7 does wonders for your disposition.)

I began to have regrets that I had meddled and somewhat goaded the attending physician into action. The action oriented options all sounded crummy because they came with both known and unknown baggage I didn't like. She looked so good that for a moment I considered option one; however, I felt prompted by the Holy Ghost to recall what I had earnestly prayed for the night before--that Evie's doctors would be inspired to know what to do. This was followed up with a bit more doubt--I'd meddled with the doctor's perspective, if I hadn't done it, would they have gone down this path? Things were happening too fast, and I needed to stop, drop, and kneel.

So I did, and immediately I felt better. Prayer works.

I called Heather back, and she pointed out that if ever there were a good time to do the procedure, it was while Evie appeared stable--so we went for it. 

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1515: After a 2 hour delay due to someone with more urgent need coming in, they just got started at 1500 eastern. Could take anywhere from 1.5 to 4 hours depending on what they find, and what they're able to fix. This will be immediately followed by dialysis so they can try to get rid of as much of the dye as possible otherwise it will cause more damage to Evie's kidneys.  Heather arrived just prior to the procedure, and although the Ronald McDonald House had no openings, she will be able to spend the night in Chapel Hill at the house of the parents of a friend from work.

We gave Evie a special priesthood blessing just prior to the procedure -- our Bishop's son was conveniently heading to Raleigh to visit his sister, so he came by the hospital on his way there. Evie and I also had a prayer with the anesthesiologists just before she got wheeled away.

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1745: We've just received word that they have found what they referred to as a "slow bleeder" from the inferior mesenteric artery (IMA), which they hope to embolize (plug) with a coil.

1815: Spoke to the Vascular Interventional Radiologist about how things went. He embolized a particular branch that comes off of the IMA which appears to be the cause, but it is impossible to know for certain yet whether it acted alone or in concert at this point.

1830: Evie comes back to PICU. More updates to follow--the primary effort right now is to help Evie deal with the side effects of having been under anesthesia -- sore throat, etc. In the image I have attached, the circled area in yellow is an approximation of the area where the VIR doctor ran the angiocath to embolize the offending vessel.

Definition: The inferior mesenteric artery arises from the left side of the front of the aorta, posterior to the duodenum and about four centimeters above the bifurcation of the aorta. It is smaller than the superior mesenteric artery. It descends toward the left iliac fossa, posterior to the peritoneum, but in front of the aorta and sympathetic trunk. It gives off the left colic and sigmoid arteries, after which it continues into the pelvis across the left common iliac artery to the lower end of the sigmoid colon as the superior rectal artery.

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Warning: The final updates for today are very muddled, as I'm drifting toward sleep as I write.
2230: Dialysis complete. Evie and I are both ready for bed, and hope to enjoy a peaceful night's sleep.

A couple quick thoughts. One leaky arterial branch was embolized. There were a couple even smaller branches which were suspected of leakage, but they were left alone because they were too small to be treated--along with the fact that if you embolize everything, the cure is worse than the disease as it is somewhat akin to just capping it off. No blood can flow where it needs to and the associated bodily tissue just dies off. So one of the comments the VIR doc said was that he'd rather have to repeat the procedure multiple times fixing more things, rather than doing too much as it cannot be reversed.

At this point we are in wait and see mode. If this were the singular issue, we'll quickly run out of errant blood and our hematicrit and hemoglobin numbers will improve and then even out and stay nice and steady. We'll see what happens. If the bleeding continues, we'll likely end up having the pediatric surgeons slice out the section that is the issue. It is unclear how soon we'd look at enlisting them, and it depends a great deal on how rapid the blood loss is.

We don't have any good way to know how much of the dye dialysis was able to remove. Similarly, we don't know how much damage the residue will do to Evie's kidneys. We know from the kidney perfusion test that it is very unlikely that they'll be able to bounce back to full working order--likewise it is difficult to know how much utility they still could provide, and whether that will be impacted by dye residue.

Last thought: We haven't heard a single theory regarding what caused this bleed in the first place. I guess we may never know. We'll see what tomorrow brings. Hopefully for Evie, it will include food -- we hit our four week anniversary today (of being hospitalized)... and the poor kid still doesn't get to eat.

Oops - Possible Peritonitis

Yesterday (12/28/2013) had some great moments. Our friends invited us to the park to ride bikes and have a cookout. Evie also met the miracle makers who are members of her COTA For Evie W fundraising campaign team for the first time.

Yesterday also contained a mistake nearly one year in the making. Evie has been forbidden to swim in untreated water (lake, pond, river), she's also not allowed to get in a water balloon fight, or to take a bath.  This is all because of her peritoneal dialysis catheter which was surgically placed last January. The area of her abdomen where the peritoneal dialysis catheter exits her skin is meticulously cared for as we follow a specific procedure to change the dressing that covers it each day. Her only options water-wise are to take a quick shower, and to swim in treated (chlorinated or brominated) water.

Heather and I had thought that these restrictions had been discussed quite thoroughly throughout 2013, but yesterday proved us wrong.  Evie showered like she always does, with a minor exception - she put the stopper in the drain of the bathtub, and when she was finished washing her hair and showering herself, she sat down into the dirty water.

Heather discovered Evie with her catheter site fully submerged in the water. Our best estimate is that she had been that way for a few minutes. When the incredulous question was asked, "What are you doing?" Evie indicated that she was holding the end of her catheter out of the water, so everything was fine.

We told her a bit too adamantly that it was _not_ fine.

Long story short, Evie was re-admitted to the hospital as she is at high-risk for peritonitis. Her doctor is doing all that she can to help Evie avoid a full-blown peritonitis infection as it would cause two problems:

1. She would not be considered healthy enough for transplant.
2. If the infection were severe enough, she would not be able to do peritoneal dialysis, but rather would have to do hemodialysis (which would mean she'd have to be here at the hospital during the day three days a week for four hours each time (and three hours of driving round trip).

So far Evie has spent her time reading Harry Potter, and enjoying the Disney channel. Evie has had an IV placed (which was a much more pleasant experience than two weeks ago when she was last here.) She's receiving two antibiotics (Ceftazidime and Cefazolin) intravenously, and is in good spirits while we sit and wait for results on the labwork (they've drawn blood, and are testing her dialysate).  Her dialysate looked clear when they drew it out, so that is a good sign. Overnight she had an extended course of dialysis to filter out everything possible.



Since we have approached this so aggressively, we hopefully have avoided both problems listed above, but Evie does not exactly have a track record of good luck when it comes to health issues, so your prayers on her behalf are much appreciated.

One Year Ago Today: 12/29/2012 - Calm Day, Crazy (Insane) Night

(12/29/2012, Saturday) We have heard from the doctors early in the morning that they did not plan to do a colonoscopy or a surgery today. Evie is not stable enough, and since she didn't have her first stool (which was a bloody stool) today until around 1100, they are hoping that the bleeding is slowing. If something changes, they stand at the ready to take action.

She received one unit of blood this morning and successfully completed plasmapheresis by 1230 at which point the dialysis technician began setting up. She received another unit of blood during dialysis. If nothing else this borrowed blood clots a great deal faster than her own, so we'll see. She enjoyed multiple ice chips in the morning and did not throw them up, so hooray for that. In other news, the last of our family who drove across country to take care of our other kids so that Heather could spend more time here with Evie had to go home this afternoon. My gratitude will never compensate for their sacrifice -- I don't know what we would have done without their help.

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Dialysis completed around 1600. We enjoyed Skyping into an extended family party shortly after that--I suspect we were a bit of an interruption. It was good to see cousins, even via Skype, as it has been years for me. Evie enjoyed seeing a few of her cousins as well as her 2^nd cousins. Afterwards we had a bath, and then Skyped with Heather and the other kids. We also enjoyed playing a speed card game "blink" which I think we'll really enjoy once Evie gets her energy back. At 2000, Evie was sleeping--pretty much ready to be down for the night, having had only the singular stool today around 1100. (Around 100 ml's of blood loss.) By the end of the day, she'd had 6 units of insulin, and was down to 1.5 liters of oxygen at 50%.

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And then the other shoe dropped.

Evie woke up to pass a bloody stool at 2030. About 250 ml's of blood. She immediately fell asleep. At 2115, she vomited up what little water she'd gotten from a few ice chips at 2030. She fell asleep again. At 2130 she woke up to pass another bloody stool, roughly 300 ml's. She immediately fell asleep. I rushed to the 4^th floor to get a quick shower as I desperately needed one, and I never know when my next hygienic opportunity will be. She was still asleep when I returned at 2200. I passed out as well.

By 2330 I awoke and we took care of another bloody stool, this one only 50 ml's. Evie didn't really even wake up for this one. We put in an order for two more units of blood for transfusion, and meanwhile grabbed blood samples to check her H&H (Hemoglobin and Hematocrit). In case anyone is interested here are today's numbers:

Time:	Hemoglobin:	Hematocrit:	Comments:
0400	6.4	17.6	Prior to any transfusion.
1200	8.4	25.5	After 1 transfusion, and a relatively light bloody stool.
2000	11.3	31.3	After two transfusions, prior to later stools.
2400	8.2	21.3	Post heavier bloody stools, prior 3rd transfusion

It is now 0130 and we are starting transfusion #3. She should finish #3 by 0330 local. We'll hold #4 until after her morning blood work at 0400 verifies that she needs it. If you'd asked me at 2000 whether I thought we'd have a surgery on Sunday, I'd have said, "No, things are looking up."--Tonight serves as a good microcosm of this whole ordeal because at this point, I think a Sunday surgery (or at the very least, colonoscopy) is quite probable, if not imminent come daylight.

Thank you for your prayers of faith, as well as your love and support.

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: 12/28/2012 - Blood, Bleeding, & Discovering the Source

(12/28/2012, Friday) Today began with me waking Evie up a bit earlier than she may have on her own around 0815. She'd had a bloody stool of about 250 ml's. I maneuvered the biggest chair in the room beside her bed so that I could have her positioned ready to interact with the physical therapists at 0830 so we'd be done in time for dialysis. 0830 came and went--PT was a no show.

Around 0900 I noticed the blanket I'd folded over her lap was turning red (you guessed it, that's a bad sign!) I called a nurse into the room and we went about handling the scenario. Luckily, like a good boy scout, I had put one of their super absorbent pads down underneath her, so it wasn't nearly as horrific as it would have been. As it was, blood was streaming everywhere, and clean up was rather time consuming. Typically we weigh everything afterwards when this happens so that we know how much blood Evie lost... there was too much to weigh today, but a low estimate is that she lost over half a liter.

Around this point, the doctors came by for rounds and we discussed the plans for today. Turns out that a CT scan wasn't a valid option for analysis of the GI bleed for the same reason the MRI cannot work in this scenario -- the dye they use as a tracer is too harsh on failed kidneys and would cause further damage. So the new plan included:

• Dialysis with blood transfusions
• Red Blood Cell (RBC) Nuclear Tag Scan (GI Bleeding Study performed in Nuclear Medicine)
• Plasmapheresis

Shortly after rounds were over, Evie had more blood loss, just shy of 200 ml's. She was in a bad place. She'd lost so much blood, so quickly, and her daily liquid intake is so low--I nearly forgot to mention it, but she'd also thrown up twice by this point, not very much, mostly stomach acid and mucous. It was at this point that I figured she couldn't get feeling any worse--at which point she was connected to the dialysis machine. It got worse.

It was rather reminiscent of the evening of the ninth of December. As you may recall (or perhaps as your email inbox may recall) she was low on blood then too, but today she was ridiculously low. When you start hemodialysis, at first you are essentially bleeding out, because no blood comes back right away. Evie's body was not about to put up with that--her heart rate and blood pressure went on a trip to a bad place, and she began shrieking in agony. Having witnessed this some three weeks ago, I quickly convinced the dialysis nurse to cycle back the blood--so in the end this particular instance/event wasn't as traumatic for her.

Instead of waiting to do the transfusion in the middle of dialysis (as is their goal) we immediately began transfusing one unit. Once she'd had about half of that, we re-initiated dialysis, and shortly after started another unit of blood via dialysis. Due to all the fresh non-Evie blood coursing through the dialysis machine we had clotting issues about half of the way through the process. Luckily, we were able to return her blood that was in the system (hooray!) and quickly replace all the lines and restart. In the end, she took the two units of blood, and had 1.83 liters of fluid removed from her system. This is an extreme amount, until you consider that she'd had nearly 1.5 liters added to her system via the transfusions, and saline which is added via the process. It still is an extreme amount when you consider that she'd lost 1 liter of fluid via the blood loss, at least it is in my opinion, but when your kidneys don't work, there is no way for you body to excrete it on its own, so it has to come out this way--nevertheless and notwithstanding, it is a rough tiring process for anyone, let alone a very sick, weak 8 year old.

Due to all the drama, she didn't finish dialysis until after 1500, whereas she should have been done by noon. At 1600 we went down to nuclear medicine for her RBC. They withdrew some blood, and then marked it with gamma radiation, and put it back (for 12 or so hours, she had more in common with the incredible hulk than an affinity for green) Evie watched "Gnomeo & Juliet" while she waited for the test to be over; however, it took about 2.5 hours, so after that, I read to her for a while, then she slept, then she watched the last half of "Underdog".

The results were positive (not a shock). The bleeding is discrete (fairly localized) in the large intestine, distal from the stomach, in close proximity to the spleen (although as you may recall (as I did not) that given the order of things, the spleen is not involved, it is referenced in this case in a similar fashion to me telling people I live near Raleigh. At any rate, we finished the test and got back to the room at about 1900 or so. Too late in the day to start plasmapheresis. It's first on the docket tomorrow.

Other tidbits and discussion:

• Evie lost a liter of blood today, and had 2 transfusions to replace some of it.
   
• She required 4 units of insulin.
   
• Her oxygen was decreased to 2 liters today... should be able to wean more tomorrow.
  

So now it is a discussion of whether Evie is stable enough for surgery, and whether further reconnoitering of the issue is necessary. Her GI bleed is a lower GI deal, so an endoscopy won't work (either as reconnaissance or a platform for repair) as it can only reach the upper GI tract. A colonoscopy should be able to spy out more detailed information--specifically where the bleed is and how localized it is (whether it is diffused or a tear/hole) but given Evie's state, one questions whether the additional information is worth it--a colonoscopy is not a platform for being able to fix this type of issue. One could argue though, that the RBC is not specific enough and is only two dimensional, and as things stack on top of each other in that area more information is needed.

In any case, the plan for Saturday is to start with the plasmapheresis, then do more dialysis. After that we'll either have a colonoscopy likely followed by a surgery, or simply a surgery. It is suspected she won't be done with plasmapheresis and dialysis until around 1500.

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: 12/27/2012 - "Good" Day, Bad News

(12/27/2012, Thursday)

• Evie only lost about 250 or so ml's of blood today.
   
• She required 5 units of insulin.
   
• She is no longer requiring the BiPAP to breathe and is down to 3 liters of oxygen per hour at 50% via nasal cannula (hooray, we can speak to communicate!) and I'm confident we'll be dialing that further down on Friday.
   
• Today's echocardiogram indicates the effusion (liquid collecting just outside of Evie's heart) has increased again and is now classified as moderate.
   
• She is experiencing chest pain and doesn't often mention it until she's in agony. Luckily morphine is quick.
   
• Still trying to work things out schedule-wise so we can be sure she gets physical therapy in every day -- it got cut short by the echocardiogram today.
   
• The official results of her perfusion test aren't available yet, but the off-the-cuff analysis is that her kidneys are in bad shape, and are not likely to improve much. (Exactly the news we were expecting, but it still isn't fun to hear)--so we'll be putting in an access for peritoneal dialysis sometime--but not until this whole GI bleed thing has been handled.
  
  
   
• Due to continued bleeding, an endoscopy continues to be an unavailable option. We spoke directly to the gastroenterologist at length today, and he seemed as mystified as I am about the cause... he's ordered some tests that we can do--he'd wanted to do an MRI, but that would involve injecting something that would cause Evie further damage because her kidney performance is so poor, so instead she'll be getting a CT scan. I already had qualms about the amounts of radiation my little girl has been subjected to in her short 8 year stint on earth... this hospital stay is not helping.

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: 12/26/2012 - A Mixed Bag

(12/26/2012, Wednesday) Evie slept peacefully throughout the night. Today was a mixed bag. The good:

• Dialysis managed to suck out 1.2 liters of fluid, a new record.
• Evie's lungs are improving well as confirmed via stethoscope and x-ray.
• Completed the course of several antibiotics, leaving only the prescription of amoxicillin--necessary to deal with the increased risk of meningitis due to the Lamborghini Juice (Soliris).
• She required only 1 unit of insulin all day today :-)
• Scheduled tomorrow for a Kidney Perfusion Test which will give us a much better idea of the long-term utility of Evie's kidneys. If they are going to bounce back, it should happen within the next four weeks or so -- this test should give us an idea of how much they may be able to bounce back.

The not so good:

• Evie lost as much as 400 ml of blood today via bloody stools. A great deal of it was bright red and liquid -- thus we can scrap the theory that it is old blood and that the bleeding has tapered off.
• She also vomited today, about a cup or so of what looked primarily to be stomach acid. We can't blame this on the side-effects of medication as we dropped several medications today and didn't add any. It can't be blamed on a nosebleed as no blood was in it as she hasn't had a nosebleed. Possible causes include her pancreas being upset about the ridiculously small amount of liquid that is coming its way via ice-chips and medicine taken orally. Option two is that she has been over-dialyzed.

We'd hoped to do an endoscopy tomorrow or the next day, but due to the increased blood, it may not be an option that soon.

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: 12/25/2012 - A Hospital Christmas

(12/25/2012, Tuesday) Who has experienced having a kid sleep in on Christmas day? Granted, its an extenuating circumstance, but it still feels odd. It is nearly 1000, and Evie's still sleeping (although I have kept the room as dark as it can be.) I thought for sure she'd wake up when I moved her for her chest x-ray at 0600. Not a peep. At 0900 when she needed an insulin shot I thought, surely Evie's slept long enough that she'll wake up for this. Not to mention the three or four nurses/doctors who came in to check on her in between. But no, she's still peacefully resting. What a blessing!

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Evie woke up just before 1100. We quickly took several overdue medications, then launched into opening presents. Santa left her what appeared to be the biggest gift bag ever chock full of toys as well as the "Perky Puppy" Stompeez she'd asked him for on the 23^rd (pictured to her left below.) When I asked Evie what her favorite gift was, she indicated it was a Polly Pocket that was just one of the many items in the bag. The sheer volume of generosity from random strangers was overwhelming for me. By 1300 she wanted and needed to take a nap. It took until 1430 for her to get comfortable enough to fall asleep (the morphine probably helped). We eventually woke back up, and Skyped with Evie's sisters so that they could see her open their presents and she could watch them open hers.

It was fun for us to watch Evie's 18 month old brother via Skype. His swath of destruction was amusing to us as we were safely virtual and didn't have to worry much about the trouble he was causing. The little guy seems to have grown up a lot while we've been gone. It sounds like he's starting to talk too. (Finally!)

Health-wise, Evie had 3 bloody stools today, but they were each small enough in volume that it would have taken about five or six of them to match a single diaper during her heaviest bleeding thus far. So relatively, it was a good day. The doctors were hoping this morning that the flow of blood was decreasing because at some point, when she seems stable enough, they want to do an endoscopy. If I had to guess, I'd say we don't yet qualify for that. Evie's x-rays today show improvement in her pneumonia, and her blood work earlier today was encouraging as everything that relates to internal bleeding is trending down.

We'd been granted a special exception to the rules for today (no limit on the number of guests, and the doctors were going to allow her siblings to visit, even though their policy disallows anyone under 13.) Unfortunately, we weren't able to take advantage of that kindness due to illness (strep-throat anyone?) which developed suddenly back at our house. Evie's older sister complained of a sore throat last night. Today, after opening presents Heather ended up taking her to instacare.

Hopefully she's been quarantined quickly enough that Heather, the kids, their cousins, and their grandparents don't end up with it as well. I sincerely hope our extended family did not acquire it, and am exceedingly grateful that they made the long trip to visit us, as things at home otherwise would have quickly escalated to one of those "our camel can't hold any more straw." moments.
 

Evie and I played a few games, played more piano for the nurses, read a book, and just enjoyed the rest of our day, finishing strong by playing with Evie's new Polly Pocket (she conveniently named Evie) and a new Zhu Zhu pet named Kingston. I think we enjoyed Christmas as much as we could have, given the circumstances.

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: 12/24/2012 - The Hospital Room Day Spa

(12/24/2012, Monday) Today went quite well. We only had one bloody stool, and comparatively speaking, its volume was rather insignificant. We started the day with dialysis, and Evie's body managed to give up an entire liter of liquid (net!), which is unheard of (usually her body struggles to provide 500 ml's.) In the past, they have pulled the liquid out during the clean/detoxify process. Today they did a separate fluid pulling process, then did the detoxify process. The results were a significant improvement. The question now is, did the changed process have anything to do with it, or was it simply all the transfused blood from yesterday that made it all possible? Hard to say, but we're hopeful the process is the trick, so we'll do it this same way again, just to see. They gave her another transfusion during her dialysis,to make her feel better and boost her numbers.

The first thing Evie said to me this morning was that she couldn't stop thinking about hamburgers, pizza, etc. That is unfortunate, because she still isn't allowed to eat. I did manage to finagle approval for her to eat ice chips, but basic water is not yet an option. We watched a movie, made some crafts, played some games, etc. Evie was once again cleared of having any nasty bug (such as C-Diff) therefore the contact precautions (masks and fancy robes) are no longer required. She spent the day on a significantly reduced amount of oxygen, although she's back on her BiPAP this evening, just to make the night easier.

We gave Evie another sponge bath today and washed her hair, then moved her out of the bed into her chair At the end one of the nurses helped us out by putting her hair into two "fishtail" braids. Two of the nurses assisted with painting Evie's fingernails--so in a way her hospital room became a day spa today.

Toward the end of the evening we Skyped back home to join in on the Christmas Eve tradition of opening one present. She then played a couple of Christmas songs on the keyboard for her nurses and doctors. We ended the night by watching a few music synchronized Christmas light displays on YouTube, as well as a Hallelujah Chorus flash mob, and several Mormon Tabernacle Choir Christmas Hymns. We then reenacted the story of Christ's birth using the menagerie of stuffed animals and My Little Pony's as characters. We shared with each other what we each felt was the real purpose of celebrating Christmas. It was quality time.

Here's to quality sleep. I hope you all get some too. I'm guessing in her tired state, I'll sleep in later than most of you. Merry Christmas!!!

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: 12/23/2012 - A Day of Bleeding, Transfusions & Extra Dialysis

(12/23/2012, Sunday) Today finished strong and turned out to be a good day, but it was not without its setbacks. If you don't want bad news, don't read this post--just know that it was a hard day, and things appear to be more under control now.

Evie lost a tremendous amount of blood today between several violently bloody bowel movements as well as vomiting-- both of which have been dominantly blood and clotted blood. She did not express that she was in any pain today which actually worries us quite a bit: Evie's either gotten tired of telling us (bad) or has gotten used to the pain to the point that she is desensitized to it (worse).

The day started by waking up around 0600 to the discovery that Evie had a bloody nose while wearing a mask (on BiPAP) where there is nowhere for the blood to drain out. It's unclear to me how much blood there was as I wasn't fully cognizant at first and the nurses acted quickly. Plenty of blood got on her gown. The air from the BiPAP has 0% humidity, which likely led to the bloody nose. It turned out to be a good thing though, as it made it possible for us to also discover the blood she'd voided.

At this point we were still planning on sticking with our original plan, which was to skip dialysis today, and do it tomorrow. Around 1000 we moved Evie to a chair so that she could enjoy some time away from her bed. Around 1030 she vomited out a volume of what seemed to be nothing but blood. My theory is that this may have been from drainage during the middle of the night from her bloody nose, but it is hard to say. At this point, it was obvious she'd need at least one transfusion, and because of that need, she would also require dialysis due to the additional fluid.

Evie's mom and grandpa arrived around noon and since we're only supposed to have 2 visitors in the room at any given time, I left to go eat. I came back a half our later, they told me I'd missed the excitement as she'd thrown up again. This time it was a much smaller amount, and only laced with blood--it primarily consisted of stomach acid, and phlegm from her lungs. I left again to go shower (upstairs in the NICU), and by the time I came back a half hour later they said, "You missed the excitement." --This time they'd discovered more volumes of blood had been voided, to the point that it had soaked and stained the chair Evie was sitting on.

She began dialysis. During dialysis, they gave Evie two units of blood (maybe more?) Meanwhile I left the room to do laundry. I soon came back and ignored the 2 visitor limit. The nurses did not seem to feel that it was a good time to wag fingers at me, so the rule went unenforced. After dialysis she got extra platelets. I believe there was more voiding of blood, and possibly more vomit, but I can't recall for certain. The total amount of blood she's had transfused up to this point is roughly half of what her body can hold.

Evie slept through large portions of the day--between the loss of blood, her pneumonia induced labored breathing, and everything else, she's just tired. She struggled to get enough oxygen without being on the BiPAP during the day, so we switched her over to a nasal cannula setup which worked very well for her as she was able to ditch the mask. At nighttime though she has to go back to the BiPAP.

Without something more specific to blame at this point, the doctors are simply referring to her GI bleed as Acute Colitis. They suspect that this is due to her HUS being aggravated by the pneumonia, and thus we've rekindled flames that we'd hoped would never light again. It is all supposition really, as HUS isn't supposed to have relapses... it seems to me that we are muddying the waters between HUS and aHUS (not that the line of demarcation was clear to begin with.

We finished our "decorations for the newborns" project today. Evie also "watched" a couple movies and a few short Christmas videos online. Mr. & Mrs. Claus and an elf stopped by and asked her what she wanted for Christmas--Her laconic response? Stompeez. One of her nurses has taken it upon herself to locate and purchase some for her. Everyone here is so kind, and they all adore Evie. We enjoyed Skyping with various family members, and had a brief bit of energy at the end of the day where she played a few songs on her keyboard from Rec Therapy for Grandma and Grandpa (via Skype), as well as a song for several of the nurses and doctors.

Due to all the extra liquid (via transfusion) we'll need to do dialysis again on Monday (12/24/2012), the plus side is that this means we shouldn't need to do it on Christmas.

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: 12/22/2012 - The Writings of Evie

(12/22/2012, Saturday) Evie slept well last night, and slept through the majority of the day today. The physical therapist came by and tried to work with Evie, but she was already tired to the point of collapse so we cut it short. On the positive side of things:

• The amount of blood loss today was significantly less.
• C-Diff tests came back negative.
• She had very little stomach pain (compared to yesterday.)
• She did well enough that she was on regular oxygen (but not regular room air) throughout the day, and went back on to her BiPAP at bedtime.
• She's a stomach sleeper at home, but here at the hospital, the position she's defaulted to as the most comfortable is folding herself in half at the waist--I like to call it the pretzel of pain, but she likes it. It reminds me of a stretching exercise I always failed in 8^th grade P.E--Anyhoo, I digress, the point is, by convincing her to sleep primarily in a sitting leaning backward (think lazy-boy) position, most of the swelling in her face dissipated through the night.
  
  
  

She did vomit again tonight -- it appeared to be a mixed bag of stomach acid, lung crud/phlegm that she's coughed up, and a bit of blood. The theory is that a side affect of a medicine she just started is the culprit, so they plan on tweaking that a bit. They have not yet determined the cause behind her GI bleed.

Other random stuff:

• The BiPAP machine is very loud, and it is virtually impossible to hear Evie talk so she writes down what she wants to tell me. (Which makes me feel a teensy bit better about the fact that she has done essentially zero homework in the past month.) To communicate now, she has to do a lot of writing -- here are a few things she's written:
  • "Daddy my dreams are getting me frustrated because all they make me is hungry."
  • "I would like for you to do me a favor it is that I would like you to find some fingernail clippers."
  • "My mouth is dry I want something to drink!"
  • "I would like to make a birthday card for Joey."--He is one of her classmates, and she correctly remembered that it was his birthday yesterday.
  • "With a little help from the nurses I would like it if we could set up some stands with streamers for the infants."--She recognizes she's one of the big kids in PICU (comparatively speaking) and wanted to make curly ribbons to help decorate the infants cribs here to make their rooms more festive for Christmas.
  • "Dear dad I know what Santa can get me and my sisters this year. Well while I was watching T.V. I came across a commercial about Stompeez they are the things that I think Santa can get this year."--I told her today was a bit late to mail in a request to Santa. She looked at me with one of those "You-know-that-isn't-a-real-limitation" looks. So then I looked them up online and read aloud several unfavorable reviews that essentially called the toy and the company that makes it total garbage. She's still convinced it is a great idea.. the advertising exec that made the commercial really needs to find a better cause to throw her/his talent toward.
• You may recall mention of her meeting a 14 (or so) year old boy from the burn unit that she played with briefly in the playroom the other day, and how she was sad that she couldn't go back again the next day when she returned to PICU. She decided to make him a Thank You card, and then it was my responsibility to track him down and deliver it to him. It was fun to see him blush with embarrassment in front of his mom. Good times.

Today was a pretty straightforward day which was nice considering that our pathway to recovery has not been without its twists. Thank you all again for your prayers of faith on our 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: 12/21/2012 - Exhaustion, GI Bleed & Possible C-Diff Infection

(12/21/2012, Friday) Evie slept a great deal today. Her little body is struggling and the good fight is getting to be physically exhausting for her. She slept quite well through the night, with the exception of waking me up at about 0320 in the morning. She'd had a very traumatic bowel movement -- more blood than diarrhea, much more liquid than solid, and large enough in volume to warrant an early morning transfusion. She went on to have four or five more heavily bloody bowel movements throughout the day resulting in an additional transfusion and extra platelets. The doctors are adequately certain that the blood is coming from her gastrointestinal (GI) tract.

[Bloody bowel movements have been nearly daily occurrences ever since Evie first fell ill. At the beginning we didn't recognize that what was coming out was blood (it was "old blood" and had an appearance more similar to coffee grounds.) I regret not having documented it more during the first three weeks of our hospital stay.  I was trying to avoid the banality of it all but in hindsight, I wish I'd tracked it better because now, the severity of the problem is significantly amplified. Evie has had so many other problems which have had to take precedence, but at this stage, the volume of blood which she is losing brings this issue to the forefront.]

She's had multiple x-rays today between her lungs and her stomach (no effusions detected==good). The cause is as of yet undetermined -- they're not quite ready yet to perform an endoscopy, given her current state of health -- they feel the most likely culprit is a clostridium-difficile (C Diff) infection. That being said, the results for that test have come back negative--they'll continue to test for it for the next two days before they rule it out.

Her lung function has declined in the later afternoon and evening, but it still isn't as bad as it was briefly 30 or so hours ago. She had dialysis today, but they weren't able to pull much fluid out of her (nor were they able to the two prior treatments). At this point they theorize she's suffering from a bit of mild capillary leakage which happens to everybody here and there. The kicker is that in a healthy person, this is self correcting, whereas in her current state of health, Evie's body is not correcting anything. You'll notice in the pictures below that her face, particularly her eyes are becoming quite swollen, and unfortunately there is precious little we can do about it.

She is yet again desperate to be allowed to eat and drink (particularly because of the dry air from the BiPAP.) It may be a while, and it will likewise be a slower road back to "real food". But I think she is back to the point where she'd declare the corrugated-esque graham crackers delicious, so it may not matter.

Today's highlight was a visit from Evie's Aunt, and hosting an impromptu piano recital from her room in PICU while she played half a dozen or so Christmas songs on a keyboard that we borrowed from the recreational therapists. It boosted her spirits, but it also tuckered her out to the point that she slept for a few hours afterwards.

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: 12/20/2012 - Lung Improvements and PT

(12/20/2012, Thursday) Due to the previous rough night, Evie and I both spent a good portion of the day sleeping, but we did have a few things of note happen today:

• The Lamborghini Juice (Soliris/Eculizumab) company, Alexion Pharmaceuticals sent representatives to provide a variety of printed materials to explain in greater detail and clarity what aHUS is, including a Patient Symptom Tracker and kids guide. It was nice of them to come by, and the printed materials are great, but I *really* hope that we really are not in the aHUS boat, as I am still clinging to the hope that once we heal everything that is currently damaged, we'll have mastered this experience and will not have to repeat it.
  
  EVER.
  
  That being said, I think the line between HUS and aHUS is a bit fuzzy, and due to the non-traditional method they used to discover evidence of shiga toxins in Evie's gut, I think there is still a bit of "Are we sure?" when it comes to putting her on either side of the that murky delineation.
   
• The physical therapists stopped by today. I'm so glad they did. Evie has nearly reached the four week mark when it comes to having been off her feet, so it is becoming more important every day to find ways to get her moving and exercising. The trouble is, it seems every day there is a new issue that makes her feel awful, and leads her to have no desire to move.
  
  
  
  
  They had her stand on her feet for a few seconds twice, and she stood solely on each foot briefly while holding her walker. She also did a few different types of leg lifts, all while playing connect four, and being forced to reach far with her arms each time she wanted to grab a checker. I need to convince her to play that way with me--and I need to be smart enough to recognize when she has enough energy to do it, and when she's running out of steam so I don't over-exert her.
   
• There was a good portion of the day where she was able to go off of the BiPAP, and back on to regular oxygen. She was actually doing really good today, the problem is her breaths are too shallow, and it makes her work too hard from a pulmonary standpoint. We put her back on BiPAP in the late afternoon so that she wouldn't become too exhausted. The nurses report that her lungs sound much better, and she has coughed up enough crud that her pneumonia is roughly back to where it started with only the bottom lobe of her right lung being noticeably consolidated (I've got to say: I think that the medical field made a poor choice, and "consolidated" is a really lame term to use in this case.) My goal is to have her spend her day laying on her left side tomorrow, in hopes that gravity will help with the healing.
   

I was able to have Evie's nephrologist Skype with Heather today to give her a quick update. Technology is handy. Evie went to bed around 2330 tonight after having enjoyed Miracle on 34^th Street. Our sleep schedule is out of wack, but at this point, I'm just elated when she gets enough. I'm crossing my fingers to get an early Christmas present of enjoying our 8^th room at the hospital, so long as it isn't in ICU. Preferably on the 6^th floor so we don't have to move again. Hopefully my wish comes true within the next four days.

I may have more to comment on this tomorrow as we have a meeting scheduled with the majority of Evie's doctors to hash over this, but here is essentially where we're at:

• Kidneys: I can happily confirm that some urine production has occurred. At this point we're talking single digits of milliliters per occurrence, but still that is truly good news. Time will tell just how far back they will bounce, but it is encouraging.
   
• Pancreas: Still cranky about food, and possibly suspected of not producing enough insulin. She's only been off that steroid for her heart for a day or two, but reading between the lines in the furrows of her doctors faces, I'm guessing they expected the playful banter between her blood sugar and her body's insulin to subside, and we aren't there yet.
   
• Lungs: Only one of five lobes in her lungs (specifically the bottom lobe in her right lung) are consolidated. Currently we're treating this via antibiotics.
   
• Heart: If we could get the aforementioned organs to respond to treatment like her heart has, we'd be home already. Her heart currently presents no issues.
   
• Muscles & Bones: I know I alluded to this earlier, but nearly four weeks have gone by that she hasn't been moving or eating or drinking as much as she would on a "normal/healthy" day. Nutritionally, this leads her to be lightheaded and dizzy. She is too weak to do much. We need to resolve the major organ issues above before we can make any significant ground on this issue, nevertheless, it is most likely that this issue may (if we aren't part of the aHUS crowd) have the longest lasting impact.

I think that is everything for tonight. Thanks again to everyone who has fasted, prayed, Skyped, called, and or sent emails, gifts, or other well wishes to and for my little brown-eyed girl. You guys are the best. Merry Christmas, and travel safe.

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: 12/19/2012 - A Collapsed Lung that get's BiPAP'd in the Night

(12/18/2012, Wednesday) Evie had another echocardiogram which showed her heart function is excellent and has not changed. An x-ray early in the morning (which I'd alluded to in yesterday's update) has shown that she had a "consolidation" (junk) in the bottom portion of her right lung. Throughout the day, Evie's inhale/exhale ability did not improve. She enjoyed having Grandma & Grandpa visit for a few hours and we put together a gingerbread house (We tried to make our friends the Lowe family proud!) -- Evie acted as the architect and grandma and I were the general contractors. Evie got really tired, and had to catch a nap once we were done.

 
Evie enjoyed Skyping with her sisters and little brother in the evening, and enjoyed a special treat of getting to Skype with Aunt Angela & her kids. Both calls did a lot to buoy up her spirits. I was particularly encouraged by how loud Evie tried to talk while on Skype -- the last couple weeks she's been rather non-communicative, and nearly inaudible when she does talk, but she perked right up to talk to cousins.

We originally were going to go to bed around 2030, but between various respiratory therapy checks, she was no longer sleepy, so we stayed up a bit later. She'd had a low fever began to climb, and Tylenol didn't have any impact. At about 2300 we ended up giving her another sponge bath to help her body cool off -- this time she also got her hair washed, and styled with french-braided pig tails like Laura Ingalls. We finished around midnight, and her fever broke.

By 0200 her blood oxygenation was dropping, and her breathing was getting laborious. By 0300 we'd had another chest x-ray to discover her right lung was fully consolidated (full of junk) and had collapsed (note: this is not the same as punctured, and due to TV you may have watched may have an overly negative connotation in your mind. It isn't good, but it isn't as bad as you may think.) To deal with this new predicament, we did a few things:

• Additional medication to break apart the junk in her lung
• Additional antiobiotics, specialized for the infection we're dealing with
• Nebulizer treatment to widen the breathing passages
• "Percussion/Pulmonary Therapy" -- Essentially getting a thumping on your back for 5-15 minutes to encourage the junk to get coughed out.
• Increased the air pressure via a BiPAP (Bi-level Positive Airway Pressure) machine, which pressurizes the air to help someone in Evie's predicament to get more movement of air in the lungs. Typically the starting pressures are 10/5, but in Evie's case, we began and are currently holding at 13/8. She began at 40% oxygen, but it has since been dialed back to 35% oxygen.
  
  

Unfortunately, this means that she's back to dinner in a bag (TPN) but at least that means her pancreatitis will give her a break:

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: 12/18/2012 - Play Hard & Pray Hard: Pneumonia and a New Born (We Were Expecting)

(12/18/2012, Tuesday) Evie slept fairly well, but awoke in a lot of pain due to her pancreatitis. She made the decision independently to skip breakfast. Upon hearing she was in pain, the doctor specified that she shouldn't eat, so we were all on the same page. Her Uncle Leif was able to come up to visit and assist today, which was really awesome. Eventually, Evie was able to get pain medication (morphine) which made her much more amiable. She enjoyed getting a bath, and I was able to get a handful of sticky-remover wipes and spend about an hour peeling off two dressings which needed to be removed. Between the morphine and Uncle Leif's caring distractions, we were able to go slow and steady to win that race. Two difficult dressings removed without any shrieking -- and I even cleaned up several other spots had leftover residue from previous dressings. She was able to get a sponge bath as well, which wasn't what she'd had in mind when she asked for a bath, but in the end I think she enjoyed it. We had a bit of a fiasco trying to order oatmeal for lunch but eventually it arrived, and it got eaten.

Evie's hospital teacher came by about 15 minutes after a movie had started, so when I turned it off she was noticeably perturbed. Eventually she was coaxed into reading a book to the teacher, which was really good for her as its been about 3 weeks since she read anything herself, and for her that is way too long to go without reading.

Afterwords we put Evie in a red wagon, and just wandered around our floor hallways for 20 or 30 minutes. That went well enough that we decided to visit the children's play area. We started off by playing a piano, which again seemed to help re-awaken part of her that has been dormant for weeks. We enjoyed playing a few games (Cranium Hullabaloo, Cooties, trains) and ended up staying for the full two hour block. We may have pushed her to do a bit too much, but it was great to see her out and about.

Shortly after our return she took a two hour nap while I drove home. I left the hospital for the first time in two weeks, and spent 12 hours away so that I could be there for Heather's Ultrasound. The little guy doesn't have a name yet, but look at him from this side, isn't he adorable?

The report from Uncle Leif is that Evie went to sleep around 2230, having received both Diazipem and Morphine. Unfortunately during the night she started having problems breathing. Long story short, we have detected fairly early that she has developed pneumonia. Evie is now on 15 liters of oxygen per hour at 40% (Meaning she's inhaling air that contains 40% oxygen vs. the 21% oxygen that regular air contains.) It appears it may be an infection rather than simply extra fluid in the lungs, but between her x-rays and the general presentation, her case doesn't quite match what is typical. So we've moved again, back to Pediatric ICU -- our seventh room. If we're able to get her off the extra oxygen, Evie could go back to a regular room Thursday (12/20/2012).

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: 12/17/2012 - Sleep Deprivation, New Room #6

As is our new schedule, we woke up at 0600 for a blood sugar check, followed by a shot of insulin. Just in case anyone is curious, this is not a recommended method to put an 8 year old back to sleep. We then checked out the "dialysis patient breakfast". Too much butter and salt for the diet restrictions they've placed on her, and certainly not foods she is willing to eat. Consequently, if any of you find yourselves in Chapel Hill every other day at 0600, I know a little girl who would ***GLADLY***give up an entire bowl of Grits for a single pancake, or even old school Cheerios (which I began stockpiling at lunch today). The only thing Evie was willing to eat was a biscuit, which probably had too much butter/fat in it, but it was that or nothing as she isn't allowed to eat during dialysis (puts too much stress on the heart as it needs to supply too much blood to the stomach after eating.)

She finished her biscuit en-route to dialysis. She slept through a good portion of it, and while Evie wasn't sleeping, I read the first five chapters of "Dealing With Dragons" to her as we'd finished "Harry Potter and the Prisoner of Azkaban" yesterday. We finished dialysis around 1130, and she ate nearly a full container of dry Cheerios on the way back to the room where a real breakfast was conveniently waiting as I'd ordered it an hour earlier. She voraciously gobbled down her pancakes and promptly fell asleep again, at which point the nurse informed me that we were changing rooms--again. Heather, her sister, and her mother were on their way to the hospital to decorate Evie's room for Christmas as we're here for the long haul, so I was grateful that the timing worked out such that the new room was ready to receive them by the time they arrived. Would've been really sad if we'd decorated the old room and then had to move. Cross your fingers that we don't have to move again--for those of you who aren't tracking we've now enjoyed six different rooms at this hospital--that's right, we get around.

Evie had the dressing changed on her other PICC line today, which is really worse than having it removed. She was again shrieking and sobbing. Poor thing.

It is currently 2330 and she isn't sleeping peacefully, but she's already slept about an hour, so she's on pace to beat yesterday's total. She has a couple more days of the steroid, then hopefully the blood sugar issues will be able to resolve themselves. Since her kidneys continue to not demonstrate progress, she will likely have another procedure at the end of this week, or perhaps right after Christmas to have a more permanent access put in for peritoneal dialysis. Grateful the technology exists, sad that we'll likely need to use it.

I want to thank everyone for all the thoughts, prayers, and actions. Evie's received so many cards, and presents to help her take her mind off of things. She's particularly fond of the cool audio and video recordings of well wishes from cousin's and friends. We appreciate so much the kindness that everyone has shown 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.

Donate to COTA in Honor of Evie W!

We have hit the 20% mark of our initial fundraising goal!  Thank you so much to all of you who have generously donated this Christmas Season.

Are you considering donating, but curious what your gift would pay for?  No charitable gift is too small, and all donations to COTA in honor of Evie W are tax deductible. The scenario is slightly different for each transplant patient, but here are a few things that apply in Evie's case that are likely applicable for most COTA patients:

Items insurance does not pay for:
$5 - One month supply alcohol wipes for checking blood sugar
$8 - One day of parking at the hospital
$10 - Three month supply of prescribed over the counter vitamins (D, Iron)
$15 - One trip to the hospital (parking and gas)
$20 - One month supply of protein powder supplement
$30 - Parking, gas, and meals for one trip to the hospital
$60 - One year supply of anti-bacterial soap and paper towels (necessary to perform dialysis from home)
$100 - One year of gasoline (for monthly clinic visits)
$200 - Projected monthly co-pay for anti-rejection medication post transplant
$300 - Three months of medicare coverage premiums
$1200 - One year of medicare coverage premiums
$???? - Co-pays, patient's portion of medical procedures, anesthesia, etc.

Other factors to consider:

• Each transplant lasts on average 5-10 years before the body eventually rejects it.  Occasionally a transplanted kidney never functions. At UNC Chapel Hill, the longest running transplant is at 20+ years (this is uncommon).
• The full cost of a kidney transplant at this time is approximately $300,000. With each transplant, the body develops more antibodies. It is projected that Evie will be able to have 4 or 5 transplants before she has too many antibodies to make transplant feasible.
• For the rest of her life, Evie will either be taking anti-rejection medication, or she will be on dialysis. The pre-insurance cost of the anti-rejection medication is estimated at $2,000 monthly. The pre-insurance cost of dialysis supplies is approximately $30,000 monthly. (Transplant is actually cheaper! But most importantly, it provides a better quality of life for the patient.)
• Thankfully Evie is currently covered by her father's medical insurance as well as Medicare (because she has end stage kidney failure).  Medicare ceases coverage 3 years post transplant. Under the affordable care act (obamacare), a child can retain coverage via their parent's insurance until age 26, at which point every parent hopes their child will be able to acquire and pay for sufficient coverage.
• The cost of insurance is increasing. In Evie's family's case, the most important number related to coverage is something called the "Catastrophic Annual Maximum" (the maximum amount her family must pay annually) which will increase by 50% from 2013 to 2014.

Please remember, your donation to COTA in honor of Evie is tax deductible. Your employer may match your donation, multiplying its reach, visit http://www.matchinggifts.com/cota.

If you are a federal employee and would like to contribute to COTA in honor of Evie W as part of the Combined Federal Campaign, specify CFC 11145 on your pledge form. After making your pledge, please photocopy the pledge form and send it to COTA (fax: 812.336.8885 email cota@cota.org) and specify that you want your gift to be designated toward the COTA for Evie W Campaign. Gifts made to COTA through the CFC that are not designated for a campaign will benefit all COTA patients.

Please visit http://cota.donorpages.com/PatientOnlineDonation/COTAforEvieW/ if you are ready to donate now!

One Year Ago Today: 12/16/2012 - Pain & Ponderings

(12/16/2012, Sunday) Evie slept well through the night, but suffered wild blood sugar swings and (unrelated) stomach pain throughout the day. I neglected to mention that she'd asked for another priesthood blessing on Saturday, so I contacted the same member of our church here in Chapel Hill as before and he quickly left his family to aid mine. Today he brought one of the deacons with him and provided us the sacrament. We listened to / watched the Christmas Devotional, but I don't know how much Evie got out of it. We'll probably listen to it again soon.

She had one of her PICC lines removed, which in and of itself wouldn't cause much grief, but the surrounding bandage that had been attached for well over a week had a death-grip on her little arm hairs made her shriek in pain.

Heather left around 1800. Evie and I enjoyed listening to a music CD that Aunt Rachel had purchased for us which seemed to get her back to a calm and happy state. I stumbled across several free podcasts accessible via the iTunes Store which I downloaded, and I had her listen to a reading of an article by John Bytheway, Five Scriptures that Will Help You Get Through Almost Anything, which you can read in the September 2008 issue of the New Era.

We had a few conversations about her current trial, and her concerns during the day, and talked about it in more detail as bedtime neared. I like to think it helped. Unfortunately, it certainly did nothing to make her more sleepy. Around 2230 eastern we called Evie's Grandma to sing Happy Birthday. (Long story short, Evie didn't fall asleep until after 0300.)

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.