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.