Wednesday, September 12, 2012

Hola from Room 2052!

It has happened, today we had an Olivia "first" and not in a good way.  Today marks the day that Olivia had her first unscheduled admittance to the hospital.  What the what what you're asking - or how did that happen without a word of it on here?'s been a journey getting here and I don't mean the good kind but it has been full of learning experiences.

A couple of weeks ago I went on a business trip to FL.  When I came back that Saturday night, Brian mentioned that Olivia's incision from the Fontan looked sort of angry and red and suggested I take a look at it.  I raised her shirt and reviewed it definitely noting that the last inch or so of the site looked red but nothing else was amiss.  Fast forward a few days to Monday and Olivia's face was kind of puffy when I got to the house and Grammy reported she had been mopey.  Pairing that with some weird sporadic vomiting the week before my FL trip that we couldn't pinpoint a cause and then the angry red incision, I said "enough was enough" and sent a pic of her chest into the surgical team to review it.  One phone call later; Brian and Liv had an appointment at Hope to review the site for fear she had an infection.  Off they went and report showed all is well, sporadic vomiting was weird, but no fever present and her site looked awesome and HEALED.  Written off to Liv scratching at her scars (because that's what she does) and back comfy in her bed that night.

Another week went by and again, Grammy reported that Liv was off and mopey...I sat down by her and noticed her belly was really swollen, hard and warm.  Bad news bubba!  Fussy at me and displeased in general, I called the ped to get her seen ASAP.  They took us that night and our beloved doctor who is familiar working with CHD kids said it was likely that her digestion had slowed as a post-Fontan issue and was causing some reflux and thus most of Liv's discomfort and tummy bloating.  He wrote a script for Prevacid and off we went again.  Enter insurance hassle and Walgreen's delaying fulfillment of rx and another five days went by with Liv being restless, bloated tummy and disrupted sleep.  I wrote it off to untreated reflux and forced issue to pay out of pocket for the meds. That seemed confirmed when the first night of Prevacid brought a full night of uninterrupted sleep for Miss Livvy.

Enter Monday once more (9/10 if you're looking for official timeline), she woke up kind of swollen but written off from restless night of crying.  She got her Prevacid and slept for the first night in a while, and I was relieved...but Tuesday brought a pic from Nonna of swollen Liv for me to review.  Still swollen, now I'm really thinking what's going on and greeted with fresh vomit when I walked in the door.  No good, call to Ped & Card.  Brian got there a short while later and noted how swollen she had become, not just belly, face and extremities too.  Card had already called and asked to see her this morning and I agreed, the sooner the better.

Today we hadn't even gotten much past the first few minutes of exam and I knew we were going to be here a bit.  10 minutes into the echo and I knew just like with my prenatal echo diagnosing Olivia that things were not great under the hood.  First results showed her chest and abdominal cavity were full of fluid and compromising all sorts of organs.  Now admitted she's already had an IV bolus of Lasix and Digoxin and is looking more like herself.  I have so much more to share and about lessons that I've learned already but that'll have to wait until later!

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