Thank you so much for all your heartfelt words… I found it too difficult to get through many of them last night but am slowly doing so today.
I feel a little dazed this morning & am trying very hard to resist the urge to spend every minute on the computer researching this & that… looking for some obscure website with some obscure drug that no one has yet suggested but might, just maybe, help. It’s a vicious cycle, and it’s endless. I forced myself to turn the computer off completely last night & crawl into bed with Emerson. I read her books about love (Valentine’s Day) & Lollipop Fairies until she drifted off to sleep.
Warning: It’s long… there’s a lot to say.
We have answers. They’re not good ones, but that’s okay – they’re answers & that, above all, is what I hoped & prayed for.
Emerson has extensive fat infiltration in her liver, which can be caused by long-term use of TPN (IV nutrition), but in this case is thought to result from progression of her underlying mitochondrial disease. I’m told the damage is significant & more pronounced than they’d expect to see with 8 months of TPN use. Regardless of the cause, though, the outcome is the same – cirrhosis (loss of functional liver cells leading to organ failure).
Emerson is back &, after some drama getting settled into the room, is resting. The procedures took a little over 3 hours & she did mostly well, aside from some low blood pressures. She’s spiking fevers with high blood pressures again now.
I don’t know much yet except that an ultrasound showed the texture & consistency of her liver to be abnormal throughout and her nurse (a seasoned PICU professional) said she’s never seen liver numbers this high before… ever. The intestinal scope identified areas of bowel pale in color with pronounced, protruding veins – what that means is unclear. We’ll have to wait for the pathology report to know if it’s significant or not.
Yesterday Emerson's liver numbers were slightly decreased - I was encouraged but the doctors weren't at all impressed :( Today her numbers all increased again, quite a bit... up, up, up :( :(
In 4 days I… went to 4 Bantam hockey games, 1 NHL hockey game, the aquarium, & the zoo… took everyone for haircuts… rode the light rail down town, ate out way too many times… spent mornings and evenings with Emerson, slept in a hotel room across the street with the boys… helped prepare for the upcoming school week & researched credible websites for “Alexander the Great and his influence on the Hellenistic Age”. YIKES!! Needless to say, I’m exhausted!! And, while I thoroughly enjoyed a long weekend with the boys, it was time for them to go back to school today! Time for me to refocus on what’s going on here…
Emerson’s liver numbers took their biggest jump yet this morning. Each is elevated over yesterday & one, in particular, saw a “critical” increase. The plan was to wait until Monday to make decisions, but the wheels are in motion this morning. The message yesterday was to continue slowly increasing her daily immunosuppression & watch her liver numbers – a conservative approach. The message this morning is to take action. If we wait much longer it could be too late to intervene.
Thank you so much for your outpouring of prayers. I can always count on you!
The Hepatologist (liver doc), this morning, said Emerson is in rejection. It could be the worst possible news for my sweet girl :( :( My heart is breaking :(
I've chosen to remove myself from the "plan", as every option now is a bad one. I don't want to blame myself for advocating for something that makes Emerson miserable or causes her a serious infection or the loss of her organ - I want someone else to blame. If the team makes the decisions it can be their "fault".
The plan now is to increase Eme's daily immunosuppression to a level 4-5x what it currently is & see what happens through the weekend. The hope is that will, at very least, slow down the rate of rejection. It won't reverse it. If her numbers continue to elevate they'll intervene more on Monday or Tuesday. They're being conservative as they, also, don't think Emerson can survive "typical" treatment for rejection.
Sadly the news from today isn’t as happy as the picture above. Emerson started spiking high fevers again this morning & has been restarted on all big-gun antibiotics. Her left lung collapsed more over night requiring aggressive suctioning and an increase in bi-pap settings. And most concerning of all… her liver function tests (LFTs) are up and her liver looks sick. There was hope they’d start to come down as she gets further from the code & the infection that caused it. Sadly they haven’t come down at all, but rather continue to increase everyday.
For those who've asked, here's our address:
Children's Hospital Colorado
13123 East 16th Ave.
Aurora, CO 80045
C/O Patient: Emerson White, PICU #3125
Tube is OUT! Emerson extubated to A-Vap (a step up from Bi-Pap & very similar to vent support, without the invasive tube) this afternoon... almost 4 hours and going strong :)