The road to recovery has been bumpy. Twice Emerson spiked a fever and twice broad-spectrum antibiotics were restarted. We continue to struggle with electrolyte imbalances, including low potassium & phosphorus and shifting sodium levels. And an episode of dangerously low blood pressure one night required rescue measures to correct – a lot of nurses drawing up and pushing 60 mL syringes of normal saline through Eme’s central line as quickly as humanly possible.
With a new week comes a new team. It’s a mixed bag – good to have new eyes, but frustrating at the same time. We are not in Omaha &, while our experience here has been good, this is where it gets tough – people don’t know Emerson and the learning curve is steep. It took years of proving the same things over and over again for everyone in Omaha to accept that which they can’t explain… I don’t have the patience to repeat that process here.
In general, I’m tired of not talking. Every morning residents, fellows, and students gather. They read through a list of Eme’s systems, discuss events (at least those that were recorded), hash through her med schedule, postulate the ‘whys’, and propose a plan. Meanwhile I hang my head and listen. Events are incomplete and the ‘whys’ have already been disproven. The plan, usually some version of what ‘should’ work, won’t work. This is a teaching hospital, though, and this is how it is. Every morning the group gathers – they talk; I listen.
Mostly, though, I’m tired of talking. Individually different doctors stop in throughout the day – I’m tired of reminding everyone about what happened last week. I’m tired of trying to convince them that Emerson doesn’t do it this way or that. I’ve been advocating for nearly 3 weeks and I’m tired. There’s no end in sight this morning and I desperately want to go home.
At the end of the day I think the novelty of Emerson has worn off. This team began determined to figure her out… to find a new way of managing her through a crisis… to report back to Omaha with some profound discovery. Slowly, though, one by one, specialists have dropped off and interest has waned. New patients have arrived and new challenges have ensued.
Mind you, they are in contact with Omaha and they have in no way given up, but the vigor with which this team is discussing new and creative thoughts has stalled. Instead we are left with – this ‘should’ work, let’s just keep doing it; speed it up, slow it down, stay the course.
Okay… but it’s not working. With a grand total of 8 organs transplanted over a 10-month period, nothing works quite the way anyone would expect it to.
Eme remains in the PICU on drips and multiple electrolytes – some running continuously and others as needed. The goal now is to get her “good enough”. Good enough to go home. It won’t be perfect; it never has been & it never will be. Indeed good enough is just that; I’m hoping and praying it comes soon.
In honor of Emerson, I have a request – go outside and do something fun today… even if only for 5 minutes. Pause, then, and really appreciate the moment. Maybe if hundreds of people can genuinely imprint a summer memory today, it will somehow make up for the fact that we cannot. Summer is in full swing & we are painfully aware of all we’re missing in the world outside these glass walls.
Thanks, as always, for your support. We love you all 🙂
Hope for Emerson 
I’m wondering if you are at Anschutz?
I know everything you are experiencing. I fought like crazy, I yelled at doctors, I cried at doctors, I begged doctors. We lost the battle, but every day I am thinking of Eme and your family to make it. I will go outside with my dog today, think you and Eme, and of my beloved Adam, and I will try to remember that life is good. It is hard when I see that you and the family are in so much pain
Beautiful Laura… thank you. If only fighting and wanting and begging were enough; it’s so hard. You and Adam are in my thoughts.
Hang in there mama.you can do this because you have no choice. One of the hardest pains to look back at is the regrets; the what ifs, the did I do enough, the maybe I should haves. Those are the nightmares that will keep you awake in gut wrenching heartache, sweetie. So carry on and cherish every minute, good, bad or ugly cause it’s all you got right now. Good bless !
Yes, you know… thank you
I’m sorry if I came on a little harsh. I know you are doing your best and the struggle is real and it’s hard, super super hard. I don’t understand the why,I just know there is a special place in heaven for us mom’s who’ve endured the toughest struggle life could ever throw our way. Take care sweetie and go easy on yourself.your little nugget is in good hands.Prayers for you all. (((Hhhuuggss)))
What a beautiful thing to ask of anyone reading this post. Thank you for that gift.
OK Erica. I hear you and will pray for refreshment for you. May something happy find its way into your day. I will go for a walk along the Sound and breath in the salt air just for you and Eme. Continuing my prayers for Eme’s healing.
Loving thoughts to you both,
Anne
Wonderful Anne, thank you
Hang tight ,Momma. I’ll be praying for you here in Michigan
Sending love, hugs, and prayers…
I can’t express my thoughts properly as I’ve erased and reworded this message to you several times. Emme is strong, she learned that from you. She is fighting her fight again. Her little body has been traumatized so much in such a short time, but her smile makes everything worth the wait for her body to heal once again. I feel for you with summer time and making memories, being away from the rest of the family is rough. Sounds to me like it’s time for the family to make a weekend trip. I also think it’s super important that get outside for a few hours. Go sit in the sun or go for a jog. Vitamin d will help restore your mind. Would you like a little care package for you…we can send you a pick me up. You deserve a reward and we are willing to treat you.
Oh, dear Erika. It is YOU who needs to get into the sunshine for awhile or to do something for yourself. Maybe a picnic with the boys or a walk in the park? It must be so overwhelming right now….and frustrating. Emerson needs time to heal, and the doctors will hopefully listen to your wise thoughts and suggestions. So nice of you to remind us to go out and enjoy the day. Actually, since Nate is here visiting from Florida, and it was his birthday yesterday, we went to the zoo. They have done a wonderful job and is quite impressive. But the reason I mention it is I remember taking field trips there when at Bemis. I am sure you do, too! Fun, memorable times! The good memories of fun times with Emerson are the ones to concentrate on……and hope and prayers will help to be making new ones come as soon as possible. My hope, thoughts, and prayers….