One Year Ago Today: 01/05/2013 - Hospital Hijinks

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

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

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

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

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

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

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

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

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

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

One Year Ago Today: 01/01/2013 - Hooray Progress!

(01/01/2013, Tuesday) We had a good day today. Dialysis went well, with a net removal of 1 liter of fluid. Evie had many bloody stools (total volume around 600 ml's) but all the blood was very dark, almost black, which means it is much older than what we were seeing prior to angiography/embolization. At last check her hemoglobin is 10.7, her hematocrit is 30.4, and her platelets have risen to 103. Those are all solid/stable numbers which also indicate that there is no longer an active bleed. Her body just needs to purge itself of the old blood that went places it shouldn't have been.

We did not manage to escape the pediatric ICU today. We definitely considered it, but Evie vomited up about 80 ml's of fluid toward the end of dialysis. Some of it was most definitely blood, some of it was either wildberry juice, or red jello. I believe the blood came from bloody noses (which have started up again since we're back to room air which is not humidified.) Her glucose has ranged between 112 and 171 within the last 24 hours which means she's only needed a few units of insulin.

Evie enjoyed a bit of hospital style spa treatment today. Two of her favorite PICU nurses, Joy & Kelly put her in her wheelchair with the back reclined so that she could get her hair truly washed, and conditioned--with real shampoo and conditioner! It was easily the highlight of Evie's day. It was at the very end of their shift, so it fell to me to braid her hair, at which I'm not particularly good at, but I tried. She also had her nails done, so it was pretty decent pampering, for just another day at the hospital.

At night, it was the first time the Disney channel didn't have something on she wanted to watch... we watched a bit of the Notre Dame game, but it was such a blowout that she decided she'd rather watch "Chopped" on the Food Network. I wonder what they could do with a basket containing beef bouillon, jello, and ginger ale? That is pretty much all she's been offered thus far and she's only allowed to have a couple sips per hour. It will take some time to get things back to normal--but we'll get there.

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.