It is with bittersweet emotion that I announce the closing of Emerson's blog here.
COTA has walked with us hand in hand on this journey, and the love and support from staff here has been exceptional. They are very special people doing very special work, supporting families through the darkest of times.
We have not parted ways with COTA completely, & will continue to retain a fundraising account with them in Emerson's name. We are moving to a new blog site, though, as we transition to a new phase of this journey - from life during transplant to life post-transplant.
We hope you will join us at our new home. There is much of Emerson's story that is yet to be told...
The boys are home in Colorado. After a 2 & 1/2 week visit, the 2nd one got on an airplane yesterday & it’s back to just me and the girlie! We’re laying low today… cleaning up & getting ready for the week ahead.
Amidst it all, I’ll attempt to answer a popular question these days… “how’s Emerson doing?” It’s a loaded question for sure & hard to answer in a few simple words. Compared to where she was 4-5 months ago? Great. The message is more positive & she’s enjoying life. Overall? Well, she’s not “cured”… she’s just in a better place at the moment. How long it will last is anyone’s guess.
Well… she’s requiring lots of additional supplements to maintain adequate nutrition & electrolyte levels. The nurse practitioner managing Emerson’s cares said her bowel is acting very much like a “fresh”, new transplant. Maybe it’s her bowel…. or maybe it’s her kidneys… or maybe it’s her underlying disease. Whatever it is, though, the team here has tweaked & added & increased this & that and… today Emerson is on FULL feeds, receiving ALL nutrition and hydration through her gut!! As of today, all IV everything has been turned OFF! Happy tears!! Amazing!!
Sorry for my silence… I’ve been struggling to find the right words, about so many different things.
This journey has taken us to the highest highs & the lowest lows. In my wildest dreams I could never have imagined the depths to which each could be felt & seen in one lifetime… let alone 6 short years. To say it’s been a rollercoaster may make it easier for some to relate to, but honestly it doesn’t even begin to do this journey justice. If it seems unbelievable to read, I can assure you it feels infinitely more unbelievable to live.
I’m sitting in a hospital room in Omaha, surrounded by so many familiar faces. I was asked in Phoenix if we had family in Omaha & just as the word “no” got to the tip of my tongue, I answered “well yes, we kind of do”. Indeed it feels, in many ways, like we’ve come home.
I had a long conversation with one of Emerson’s transplant surgeons this morning & I’ll be honest, he wasn’t doing cartwheels. We talked about what’s been happening & what I hope to achieve in Omaha. I think he understands why we’re here, but was very careful to say that he may not have the answers we’re looking for.
Long night… very little sleep :( Emerson’s kidneys decided to throw us a curve ball last night & everyone’s been working hard and fast to turn things around. As of several hours ago I was told she’s too unstable to transport this morning. Things are slowly improving, though, & I trust they’ll have her in a better place soon.
Cultures are positive… again… which comes as no big surprise. In addition to that, though, does come a surprise – a new, gram negative bug. A new strain of Proteus (presumably a resistant one) is now growing through 6 days of 4 strong IV antibiotics. Another gut bug. An unpleasant, unexpected surprise to start the day.
They can’t clear these bugs & as such, the team in Phoenix is now intent to transfer Emerson out ASAP while she’s still stable, fearing that could soon change. She grows more lethargic everyday but remains hemodynamically stable today. The Vasopressin drip is controlling her urine output & electrolyte losses, and her vitals are solid. If we’re going to go, now is the time.
A long post to catch everyone up (and there’s only one place where I have time to write a long post, so if you guessed that Emerson is back in the hospital you guessed right, sigh…):
Just some previews... more to come!!
Thank you so much for all your beautiful sentiments…
Today is a new day, though, & it marks the beginning of a new week. No more talk or thought about the news from last week. As I told my tearful son last night, there will be plenty of time to be sad. Today Emerson is here – let’s celebrate that & choose to be happy! I refuse to spend the time I have left consumed with sorrow and thoughts of the end. The truth is no one knows what the coming year looks like for Emerson. And no one knows whether or not this new diagnosis will prove to be terminal or not – meaning we can’t predict what will take her life, it could be a number of different things at this point. It’s entirely possible it WON’T be her liver & maybe never would have been. Rejection or no rejection, we knew this was going to be a difficult year. Not that much, honestly, has changed.