One Year Ago Today: 12/15/2012 - Feeling Lousy

(12/15/2012, Friday) As I'd guessed, today started off early with dialysis. Apparently, the nurses should have brought Evie breakfast early so she could eat first, but it didn't happen. She didn't get back to her room until about 1215. Unfortunately, she wasn't allowed to eat right away (even though her breakfast and lunch tray's were both waiting) because they wanted to check her blood sugar prior to eating. The extra delay was too much for my sweet 8 year old who was already not feeling well and was simply starving. Once they stopped sticking her she ate ravenously, but she started experiencing severe stomach pain.

And the day followed that trend from there. Although this was Evie's first opportunity to play with other kids and enjoy more of the hospital than just her room, she wasn't well enough to capitalize on it, and her only journey out of the room was for the morning dialysis treatment. By the time Evie's sisters and uncle came to visit, she was feeling lousy to the point that she really just didn't want to speak. She enjoyed seeing them, but it was beyond her tolerance level by the time they said goodbye.

Evie's Aunt & Uncle drove their entire family across the country from Arizona to be with Evie, and to help out at our house as the hospital is 1.5 hours from the house and Evie's mommy is finishing her first trimester of pregnancy (kid #5)

I'm hoping the stomach pains are an isolated incident--a temporary bump in the road, and that tomorrow will be much better. Her blood sugar/insulin issues are decreasing in frequency thanks to her shrinking steroid treatment, but the numbers still swing wildly. Gratefully tonight it is only in the 160's. If I can just get her to the point of only needing to deal with the kidney/dialysis issues that would be so good.

Please pray that Evie will be blessed with patience, faith, and fortitude as she is running a bit low -- this is all a lot for anyone to deal with, but it is particularly rough on my 8 year old.

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: 12/14/2012 - Post Op, Catch You Later PICU Take 2

(12/14/2012, Friday) Evie's procedure was "officially" delayed by 30 minutes, but it started even later than that. By the time we went down to the operating room (OR) her spirits were low as she was desperate for food and water. Everything went well, and she was wheeled back into her room around 1300. They successfully installed the new hemodialysis access port, and they removed the emergency/temporary access which was put in originally.

While she was in surgery, I spoke to the hospital school teacher about Evie enrolling next week. I also spoke to her Nephrologist about what our plans are for the next few weeks. (We will be here until after Christmas... how much after remains to be well defined.) Evie's nutritionist also checked up on me to verify that she'd been eating the right foods. In her case that means low salt, sugar, and fat, as well as eliminating potassium and phosphorus from her diet (this is the tricky part). Staying true to that guidance while living off the the hospital food services menu is exceptionally difficult.

Evie had been back in the room (still soundly sleeping) for about 10 minutes when her cardiologist came with a technician in tow to do today's echocardiogram. We had to roll her on her back which woke her up, but she seemed a bit out of it, and fell back asleep the instant I let her roll back onto her side. The echocardiogram showed that her heart is functioning normally, and the excess fluid surrounding her heart has virtually disappeared!  Great news.

She woke up around 1430 at which point she started drinking water and eating Jello. At which point, we enjoyed playing with some Polly Pockets.

The 2^nd half of Friday was a bit dramatic. We realized around 1600 that Evie had been bleeding at the site of her new incision--most likely since she had come out of surgery. It is difficult to know how much blood she lost, but they did some type of blood test and they say she's okay. While we waited for what seemed like far too long for the surgeon to come back to correct the problem, Evie's nurse had heart issues of her own, and ended up at the emergency room.

The surgeon did come though, and put more stitches in around 1730 or so. Eventually, once Evie was awake again, Heather and I changed her gown and all of her bloody bedding. We ended up with nurse we'd already had before at the shift change (1900) who immediately started working toward getting us out of ICU (hooray!) By 2100 we relocated to the 7th floor of the children's hospital. Evie is sleeping peacefully through the night -- there is minimal poking and prodding going on, and she has a single cord connected to her monitoring her vitals. Quite the change from her most critical moments when she had a dozen or so lines and was being checked and having blood drawn at least every hour.

So it seems we may finally be past the sleep deprivation, I'm just hoping to get her back on a regular eating schedule at this point -- she really only had one real meal yesterday because of when the surgery was. Saturday kicks off with an early morning dialysis treatment, which will likely cause her to miss breakfast.

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: 12/13/2012 - Blissfully Untethered on an Uneventful Day

(12/13/2012, Thursday) Evie enjoyed a medicated sleep and slept for large portions of what turned out to be a mostly uneventful day. We met with the surgeon who will be putting in a new (less temporary) hemodialysis port/access for Evie. The procedure will happen on Friday (12/14/2012) @ 1000. The new access will utilize a vein at her neck, but the access itself will come out of her chest so as to reduce how annoying it is.

She is being weaned off her steroid, reducing it by 2 ml every other day (she's currently at 6 ml). She is no longer on an insulin drip, and so far has required only one shot around 11:45pm) when her blood sugar reached over 400. It has been as low as somewhere in the 30's. Gratefully, the wild swings are caused by the steroid which she has nearly completed the course of, and although she had high blood sugar, the amount of insulin given to her in her shot was ridiculously small but it did the trick.

Since she was scheduled for a procedure Friday, they had her do dialysis today as well. Her blood pressure was in the 140's, but beyond that her heart did not seem to be having any issue with the 2.5 or so hours that she spent on dialysis today.

She ate well, although not as voraciously. She has not been allowed to eat anything midnight Thursday night / Friday morning in preparation for undergoing anesthesia. We washed her hair and changed her clothes and linens before bed, as she won't get another opportunity within the next few days. The highlight of the day was having her completely disconnected from everything and picking her up out of bed and then singing to her and dancing with her while I held her in my arms.

If you recall from my post on 12/10, we have accomplished all goals necessary to graduate from PICU. I double checked with the doctors this morning, and as long as there is a bed available upstairs, we'll be able to graduate from ICU tomorrow -- it may take until Saturday or Sunday before a bed is available though.

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 -- 12/12/2012: Blogging Impaired & Diagnosis Reloaded

(12/12/2012, Wednesday) My grandiose plans of sleeping throughout the day today to catch up on sleep did not come to fruition. Gratefully, Evie crashed at about 2100 this evening, so I am hoping I'll sleep soon
ddddddddddddddddddddddddddDDDDDDDDDDDdddddddddddddddddddddddddddddddddddddddddddddddddddddddddddd..I better keep this short because it has already taken me a half hour to type this much (although I erased most of the sleeping misstypes.)

dssssToday we:

• Began reducing the amount of steroids Evie takes via her IV--the goal is to reach zero within a week.
  
  
• Stopped doing continuous dialysis. We've officially graduated back to intermittent dialysis.
  
  
• Had the physical therapists stop by, just as we were going to crash for a nap. Hopefully Evie will be willing to meet with them again--the timing wildly infludddddenced her willingness to comply.
  
  
• Ate food. Pancakes for breakfast, a sub sandwich for lunch, and a slice of pizza for dinner. She grumbled a bit about her stomach hurting--I'm hoping that it was the sleep deprivation talking.
  
  
• Had Grandparents visit for an hour -- regrettably she wasn't really ready for company, but they all enjoyed seeing each other anyway -- (they made a 17 hour drive to be here!)
  
  
• Eliminated much of the tubing mess that she's typically tied to, so she has less to get tangled in, and less to break while she sleeps.

• Changed rooms within PICU to a hopefully quieter spot.
   
• Last but not least: Received positive lab results -- evidence of byproducts in Evie's system which indicate that an e-Coli infection did in fact occur at some point, therefore it is most likely that Evie in fact has HUS, not aHUS, therefor the former diagnosis was incorrect, so this should be a one time deal that will not reoccur.
  

Depending on how we want to manage the insulin she needs, (shots vs. drip) we could leave PICU as early as tomorrow. It still sounds as though we'll be here (at Chapel Hill) for a couple more weeks, but leaving PICU would actually make it possible to let Evie's siblings visit her.

I'd get more specific and fancy with links, but I've managed to erase entire paragraphs on accident--I should make myself a cool looking t-shirt that says
 "Blogging Impaired: Writing Under the Absence of Sleep."

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 -- 12/11/2012 The Exclusive Solid Food Eater's Club

(12/11/2012, Tuesday)

0600 -- Day begins as the "continuous dialysis machine" fails, having suffered an unrecoverable error, known in all the inner circles as the notorious "Error #2" (If you didn't catch the sarcasm there, no one seems to know what "Error #2" is... gotta love helpful failure messages, particularly when you don't have one that is.) Regardless, this meant that we needed yet another dialysis machine. Y'all probably aren't keeping track, but these things are supposed to run for 72 hours, and then put the 90ml's of blood they have in them at any given moment back into my little girl. It is Evie's experience that they last less than 20 hours each on average, and they always keep the blood.

0730 -- Another dialysis machine is brought into the room. Luckily it is discovered to be useless just prior to turning it on to have Evie bleed into it, so it got sent away to be repaired and Evie did not need yet an additional transfusion just for that.

0800 -- Another dialysis machine shows up. This one appears serviceable.

0900--Evie is again on "continuous dialysis"

0930--Echocardiogram (which began at 0900) completes... Evie and I view it as an important test today, because if the results are good enough, it may mean the advent of solid food!

1300--We eat crackers. Big mess in the bed, crumbs everywhere, but we've officially rejoined the ranks of the exclusive solid eaters club, so it is totally worth it. Evie reports that The hospital graham crackers are the kin of cheap corrugated cardboard -- nonetheless they were voraciously gobbled. Along with being excited for Evie about eating in general I'm excited with what I'm told are the results of the echocardiogram -- her heart appears normal. Her bloodwork reveals that her troponin is 0.648. It has been as high as 3.5, and the limit for normal is considered to be 0.5. Consider the following: "Increased troponin levels may also be seen in people with certain chronic health conditions such as heart failure, long-term kidney disease, and stable heart disease. Increased levels in these and other conditions can be a sign that a patient is at increased risk for bad outcomes." So the fact that her troponin has decreased significantly is very nice.

1400--We order toast from the cafeteria, and scrape on an ultra thin layer of peanut butter -- only enough to subliminally remind you of a peanut butter sandwich while you eat it, but not enough to taste it.

1700--Mashed potatoes and grilled vegetables for dinner, along with a bit of grilled chicken.

2300--Slow and steady wins the race: during our 3rd wave effort, we finish dinner.

0500--There's always room for Jello.

---

Other events of today include:

• Playing Wii with a volunteer from recreational therapy. Yeah, unfortunately this made her quite sad -- turns out Evie's legendary jump-shot on Wii Sports Resort basketball is a bit limited when her arms are lit up by IV's. Time does heal wounds though, as later in the day she told me this was her favorite thing today.
   
• A visit from the psychologists to make sure we're both handling the experience in a healthy way.
   
• Opening gifts from Evie's aunt whose thoughtfulness helped us get out of sad places.

Today was good and bad in that Evie felt well enough all day today to realize that she has been in the hospital for over a week, which led to having a big bout with being stir crazy. Desperate to leave the bed, and not  allowed to do so--having pain in her muscles and back due to sitting on a bed for a week. We had several sad moments today--but it is all good because that means she's actually *well* enough to be bothered.

The night was rough as I expected it to be. The poor little thing can't get comfortable, and she wakes up due to blood sugar checks, and random alarms so easily that we're both in bad shape when it comes to sleep deprivation. At this point, I think we'll just let go of social norms, and plan on sleeping whenever we manage to pass out, and be awake whenever we can't, and primarily be time of day agnostic. We're doing our best to take care of each other and be accepting of our limitations.

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: 12/10/2012 - Dental Hijinks & Let's Get PICC'd!

(12/10/2012, Monday) After yesterday's brutal 2nd half, I woke at about 0700 with great hopes that Evie would be able to sleep to recover from the general trauma and sleep deprivation she'd experienced.

She woke at 0740.

I stood in during morning rounds and requested that they remember to wash their hands before they come into the room, as the night before there had been a nurse come in during all the excitement who clearly should not have reported to work that day who coughed into her hands outside the door only to come straight in and start touching things. I also reminded them to take care how they move Evie, given her OI, as there have been a few instances now where she's been handled in such a way that I was half-surprised she didn't break a femur.

We had another echo-cardiogram, the results of which I haven't heard, but admittedly, I did pass out and sleep for a few hours this afternoon. My understanding is that her heart looks great, and appears to have suffered no ill effects from last night's excitement.

I had been unsuccessful in acquiring any denture wax as Evie's aunt had suggested, and the orthodontic appliance in her mouth was causing her enough grief that one of the dentists were called in to remove it. They were confident it would be quick and easy to remove. Long story short, it didn't go well, but it got her agitated again. She rolled over and slept for a bit, only for us to discover that she had been bleeding all over herself and her bedding. The splint on the PICC line put in last Sunday was soaked with blood, which was very traumatizing, because it was the best access we had to provide her with medicine and fluids. Upon further inspection, it wasn't the PICC, but her left thumb IV which we'd used the night before--it had come out while she was fitfully sleeping on her side, and she'd bled onto the other arm's splint. We were all relieved she hadn't lost the PICC, but it forced the issue that we had to put in another IV of some type. I campaigned for the cause of planning ahead to make certain we wouldn't be in a situation again where we couldn't provide medicine/fluid/whatever because there weren't enough available lines and to make sure my little pin cushion wouldn't have to endure this again, as she has managed to break multiple lesser IV lines during this hospital stay.

After much discussion, it was agreed that we'd attempt to put a PICC line in her other arm. Typically, they sedate you to put in a PICC line, but Evie hasn't been stable enough to have sedation be an available option. Armed with an ultrasound wand and a sharpie, two independent technicians marked the best opportunities for success as they knew they probably only had one chance.

Just as they were getting ready to perform the PICC insertion procedure, the dentist showed up again with one of her superiors who was supposed to be "the guy", so we delayed the PICC insertion so that he could work his magic. Several botched attempts later as Evie reached her unhappy place, they left with the device solidly where her orthodontist had put it. It was poor timing, as Evie now needed to pluck up the courage to hold still for a PICC line insertion, without being sedated. I tried to help her calm down, but had to leave as I wasn't allowed to be there for the procedure which lasted around 45 minutes. I didn't know how long it would take, and as I wandered back into PICU to ask a nurse, Evie began to shriek like a banshee. Heart-wrenching.

Gratefully they were successful. Heather arrived shortly after that and Evie was thrilled to see her. Gratefully, the constant flow of doctors from every discipline under the sun began to slow in the afternoon, and Evie's sleep deprivation took over and she rested -- so I did too. The rest of the day was rather uneventful. Heather had brought the dental wax with her and tried it while I slept. It didn't work--what she needs smoothed are two long wires, which don't have much to grab onto like braces... I may try it again though if Evie keeps struggling with it.

At this point, we're back to the dance between glucose and insulin. Her pancreas is producing insulin, but given the higher amounts of glucose and other sugars which are part of her IV cocktails, it is difficult to dial in how much additional insulin she needs. Her numbers all looked great this evening, and she has been able to get off the vast majority of the drugs which she had to start late last night to keep her with us. She absolutely loved the time she was able to spend with her mom. Health-wise, her body is significantly improved from 24 hours ago.

Our current goal is to leave ICU (and not come back!) To do that we need to:

• Get off continuous dialysis (which requires:)
  • Stable functioning heart
• Eliminate the need for IV administered insulin
• No more Milrinone -- CHECK! We turned it off tonight :-) ... and we should be turning off the epinephrine as well.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.

One Year Ago Today: 12/9/2012 - Food, Glorious Food! "So Lucky" & Life Inversion

(12/9/2012, Sunday) Let's talk about life experiences, shall we? Have you ever had something in your life that was going so right it was hard to believe, and then what I'll call "life inversion" happens--it becomes easy to believe that it isn't so right, so much so that it is difficult to conceive of it ever having been right--it seems impossible to connect the two moments in time together? For me, this pretty much describes a particular relationship my sophomore year of high school. Unfortunately, it also describes yesterday (Sunday). The day started off very well. Evie had some pain in the early morning hours, but her nurse was very responsive in helping manage it, as well as protecting her from the poking and prodding that tends to happen, so that she was able to sleep in until almost 0900.

When Evie woke, I checked her mouth because she was complaining of pain from her orthodontia appliance. Overnight it had gone from irritation to two visible cuts, one on each side (left and right) of her tongue. We tried to make her feel better with a dose of magic mouthwash, but it didn't really help. We're going to try her Aunt's idea and acquire some denture wax to cover the offending areas... I tentatively planned to sneak away in the afternoon to acquire some.

Very early on in the day we were given the green light for drinking! Evie was so happy. We even had apple juice instead of water. We were limited to 2 oz. per hour, but when you've been off fluids by mouth for so long, 2 oz. an hour seems to be an unbelievable boon. Shortly after our first drink we had what is typically a daily echo-cardiogram. Before we heard official results, we were suspended from fluids. :-(

We received official word that her echo-cardiogram results were very good. In nearly every measurable way her heart had returned to normal with only mild dysfunction and mild dilation of the left ventricle. The reason we were suspended from fluids is because there was fluid around the heart. This wasn't a showstopper, it has been the case before -- we currently manage that via the dialysis -- but there was more there than last time, which is why they were a bit more concerned.

A bit later we were again cleared for fluids -- and Evie was allowed to eat Jello! She was incredibly happy. She skyped with grandparents, and took a nap. Meanwhile, her new dialysis machine was showing signs of clogging already. This was bad and good -- perhaps it meant that she was healthy enough for heparin (blood thinner). After discussion they decided to use a bit of heparin in the machine itself, of course, some of the heparin would find its way to her, but most of it would stay within the filter to stop clotting.

At about 1330, Evie's new dialysis machine stopped working. In the fasted turnaround that we have had yet, she was back on dialysis only an hour later. We started reading through the cards her class at school had sent to her. I had to explain why a classmate would write, "You're so lucky!" in one of her cards. This life is really all about perspective. A bit later, we played the new game her Aunt sent her against a few of the nurses. Evie was on a bit of pain medication and was very drowsy, but we still managed to pull out a victory (Us vs. Nurses)

Unfortunately the new dialysis machine stopped working at 1800. When the continuous dialysis machine crashes unexpectedly it means there isn't one ready immediately to put her back on it again. In this particular case, Evie wasn't back on dialysis until closer to 2100. All this is problematic for several reasons. First, the toxins in her blood immediately reach levels which make her feel more ill--the more time passes, the worse she gets. Second, she loses about 90 cc's of blood each time it happens.

In a 24 hour period, Evie had 3 dialysis machines go offline, so she lost about 270 ml's of blood. If I've done the math correctly, that was about 20% of her total blood supply, not even counting the multiple times a day blood-work is drawn to check her levels. Gratefully, she'd had an infusion ordered after the first one went offline, but the others went offline in such rapid succession that the lost blood had not been able to be replaced prior to them initiating dialysis again at 2100 or so.

The impact was immediate. Evie's pulse quickly escalated until it was registering over 190 (keep in mind that 90 is average, 70-110 is the typical range for her age.) Inversely her blood pressure dropped to the point that she was mid 40's over high 20's. For someone Evie's size, that should be doubled at least. Things were very dicey for a few hours and were complicated by glucose/insulin issues, complications arising from the fluid around her heart, and not having enough lines to administer necessary medication/fluid through. The low point was having to hold my little girl still while they attempted to put an IV into her neck without using any numbing cream, or even allowing me the opportunity to calm Evie down from other events, or to simply let her know what was about to happen because they were in such a rush to administer additional fluid/medication. <sarcasm>Shockingly</sarcasm>, it didn't work, but between the stresses on her body and emotions, it put Evie into a rather dangerous place. Amongst other things she had her 2nd echo-cardiogram of the day and it wasn't until 0100 that a she had stabilized to the point that we could attempt a blood transfusion.

Sadly, the only IV line available at this time was in a small vein on her left thumb, and every time we'd used it for blood transfusion it would make her cry with pain -- but it was our only option, and she had to have the blood. She had finally drifted off to sleep about 30 minutes prior, so we stealthily began the transfusion. The pain woke her up about 30 minutes into it, so for the next hour and a half I did everything I could to distract her from the pain. At 0300, we completed the transfusion--good thing too, as she was wild with pain and sleep deprivation--I don't think she could have taken anything else.

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.