Overdue Update

I’m not on Facebook often, but I was recently informed of update requests on Eme’s page and signed in to look. To be honest, it put a pit in my stomach as it’s never my intention to keep you in the dark. It seems trite to say I’m very busy (aren’t we all?), but it’s true. More than that, though, are the lingering after effects of this journey for me. Call it PTSD perhaps. I know other moms who fought alongside me for the lives of their children – similar yet unique journeys, each with their own challenges, blessings, and outcomes – and we all deal with it in our own ways. For me the memories are mostly too difficult to recall, and I do my best to suppress them. After being thrust into the spotlight for years, I crave peace and anonymity.

I’ve always said this happened to Emerson and to our family for a reason, and I’ve always believed something positive will come from it – not by happenstance, but because I decide to create positive change. I still believe that with all my heart, but I’ve had to let it go for now. The pressure it created was crushing – What will it be? What positive change can I create that fits the enormity of our journey?… it will have to be big, the price we paid is huge. And how on earth am I going to find the time and energy right now to accomplish it? I have faith it will come full circle in time, but for now I’m accepting that perhaps it just happened. No rhyme or reason or greater good, it just happened. Indeed our journey isn’t over yet; I’m still in the dugout fighting. And maybe for now, that’s enough. Maybe for now, caring for Emerson is all I have to do.

That said, I appreciate those who’ve followed alongside us through the years and I acknowledge the incomparable healing power of all your prayers. It’s not my intention to only update when Eme is in the hospital, but that, of course, is when I have time to do so. Our lives are chaotic and constantly changing – it’s all good, but crazy! Never a dull moment in the White household!

Emerson is (knock on wood) doing pretty well. We’ve been extra careful this winter & have all, so far, been spared this season’s nasty flu. And a new central line last fall, along with a new line protocol, has kept her infection free and out of the hospital. We are seeing an increasing decline in her kidney function, however, and weekly labs are concerning for the health of that transplanted organ. The dietician is adjusting Eme’s TPN formula weekly to accommodate for the kidneys’ declining ability to filter essential electrolytes from her bloodstream. There’s no doubt it’s a concerning development. We’re planning a trip back to Omaha soon to meet with nephrology and her transplant team.

Clinically, Eme has slowed down… despite a “healthy” winter, she doesn’t have the energy to do much these days. She’s sleeping more and tiring out quickly; we rarely leave home without her wheelchair anymore.

Educationally, we made the decision to home-school Emerson this year. Adding one more thing to my plate everyday has been a challenge, but we felt it best to control her exposure to germs in the winter months and also to provide her more targeted learning opportunities. As she progressed in grades at school, the classroom material simply became too difficult for her. Eme, as a likely result of 2 cardiac codes, has a very hard time grasping basic educational concepts. At age 11, she’s been working on writing her name, “EME”, for 6+ years with continued inconsistency. At home, we’re working our way through identifying letters of the alphabet and learning their sounds. It’s a tedious process! She’s so wise and savvy in so many ways, but educational concepts are a significant struggle.

Thank you, as always, for your concern and for your prayers… they are felt.

Happy spring to all!

The Umbrella Effect

We are never getting out of here.

Emerson continues on lots of IV support. Twice they’ve tried to turn off her PICU drip – the first time she lasted about 15 minutes, the second time hours, but not long. She’s back on vasopressin this morning to control excessive urine output and resulting electrolyte imbalances. Add to that increased ostomy output from her transplanted bowel, and managing Eme’s fluid balance continues to be a very big challenge. Basically her transplanted organs (kidneys and bowel) are in abundant overdrive, wasting excessive fluid & critical electrolytes.

To illustrate the degree to which Emerson is struggling: average & acceptable urine output for her is roughly 50-70 mls/hour; her kidneys are excreting 500-700 (even up to 1,200) mls/hour. Her bowel output is over triple what it should be and significantly increased over her “norm”.

The infection that brought Emerson in is a distant memory. The resulting organ fall-out from the infection, though, is proving to be the hurdle we can’t jump.

Many really great doctors are involved and no one knows what to do. I just had a lengthy conversation with a senior endocrinologist here and he stated the rather obvious – Emerson is extremely complicated. He said they’ve been discussing her for a month, and she is the most involved and puzzling case he’s seen (and he paused)… in a very long time, if not ever.

It’s August 1st and this week marks 4 weeks inpatient. Bradley embarks on a new academic/athletic adventure in 14 days and Collin is off to college (yikes!) in 18. We have to get home. We had a few weeks, but time is up. We desperately need to get home.

In a nutshell, we’re never getting out of here. It’s the umbrella effect – you plan for rain, it doesn’t come; you don’t plan for it and it does. So, I’m shaking things up a bit. Maybe planning to be here forever means we’ll actually get out. I don’t know… thinking she’s going to discharge “next week” hasn’t worked. Maybe this will. Ugh.

Gratitude

My thoughts & feelings from yesterday persist, but today I’m choosing to focus on a positive. It’s nearly unheard of that a hospitalization doesn’t result in a life flight transfer to Omaha these days, and this time it did not. This hospital has taken the time to carefully consider all of Emerson’s past medical history as well as her current medical complications. They’ve talked extensively to transplant surgeons and the PICU team in Omaha, even communicating events as they happened in the middle of the night.

All in all, there have been a lot of positives in the past three weeks and, moving forward, I’m choosing to focus on at least one a day for the remainder of this admission. Mind you, it won’t magically erase my exhaustion or frustration; but that’s okay. Those feelings are real and justified. Sitting in a PICU with your daughter as she struggles to recover from septic shock is far from invigorating or fun.

Today I am very thankful for the psych team. It began as a consult to address psychosis coming off the vent, then blossomed into many lengthy discussions about Emerson’s mental status at baseline. She’s struggled for many years with violent behavioral outbursts as well as extreme perseveration. It can be difficult to believe just meeting Eme – she is very sweet, quiet, and well-mannered much of the time. When she launches into an outburst, though, a switch flips and that sweet little girl is nearly unrecognizable.

For years it was attributed to her spending too much time in a hospital & becoming accustomed to getting whatever she wanted whenever she wanted it. I’ve been given much parenting advice over the years – walk away from it, don’t give in, detach, yada yada… News flash – I have 2 older boys and this is not my first parenting rodeo; I know how to manage a temper tantrum! What’s more, I have very deliberately not treated Emerson differently when she’s sick. I have the same expectations for her behavior when she’s sitting in a PICU as I do for her when she’s sitting at home.

Mental health is one component of Emerson’s medical picture that has been largely unaddressed. Omaha is not a pediatric hospital and there is no pediatric psych team to consult when we’re there. That’s not to say anyone dismisses it, just that the resources haven’t been available.

The biggest blessing from the psych team this week? They discussed Emerson’s case at length, reviewed all her medical history, and concluded with certainty that her outbursts and perseveration are biologically driven (i.e., they’re not a result of past circumstances or parenting style). Can I get a Hallelujah?! Thank you. It’s not me. I always knew and now it’s medically documented for everyone else to know too! They think it may have happened in one of her cardiac codes, or it may simply be part of her underlying condition. The “why”, though, is less important than the “what” do we do about it.

They eliminated one med, replaced it with a different one, and are starting another new med tomorrow. They’re watching her closely and increasing doses as she tolerates it. The goal is to calm her, but not sedate her. We may not have time to reach the perfect cocktail of meds at the perfect doses for Eme this admission, but I’m so thankful for a team of doctors that is addressing this seriously, and I’m hopeful we’ll, at very least, be in a better spot when we leave. They’re reaching out to psych doctors in Omaha now to find us ongoing support for after discharge. All good and a definite something to be thankful for today!

I had a lengthy discussion with a PICU doctor this afternoon to lay out the plan for Emerson’s drug, fluid, and electrolyte weans. If all goes as planned, she should be buttoned back up and ready to discharge sometime next week. I’m not holding my breath, but I am certainly crossing my fingers. It can’t come soon enough.

Finally, my heartfelt appreciation for sharing your purposeful activities yesterday – I can’t tell you how much fun they were to read! I’m so touched that we’re able to impact others in such a meaningful way. It helps me to see the positive in this crazy journey we are on. Your homework now is to think of one specific thing you are thankful for today…

And one last positive from my day – I stepped outside this afternoon for the first time in three weeks! And with the help of two nurses, a giant IV pole, a big wheelchair, and a travel monitor… Eme came too 🙂

Another New Week

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 🙂

Recovering

We’ve officially hit “that point” in this admission – I’m tired, cranky, frustrated, and ready to go. We know what’s wrong with Eme – we know what we can treat and we know what we cannot. We also know how she gets sick and we know how she recovers. Yes, she throws curveballs, but given that most all her organ systems are involved & affected by something, they’re usually in the context of a preexisting diagnosis. Her little body can’t handle too many new ones anymore.

Emerson is having trouble with her kidneys. It’s not a new phenomenon, but rather an exasperation of her usual presentation when sick. There are new minds involved this time, though, and with them have come new theories. And with new theories have come new treatment ideas. It’s all very encouraging. When it comes to things we’ve seen and managed before, I suppose it takes a heightened crisis for everyone to re-group and think outside the box.

Of course nothing comes without a few hiccups, but all in all Eme’s kidneys are slowly starting to recover. She continues to require frequent labs and electrolyte replacements, but urine output is finally trending down and we’re heading in the right direction.

Emerson’s skin is bruised and swollen from her brush with DIC and she’s still tired and very weak. Her kidneys have not yet recovered and she still has a few drips to wean off. We’ve talked to everyone, though, and they’ve agreed to let her discharge from the PICU. As soon as she’s off BiPAP & PICU meds, we should be able to go. If I had to guess, I’d say maybe (hopefully) next week.

I’m trying hard to be polite and political, to advocate with purpose and respect. I’ve hit “that point” though… I’m tired of being patient. I want to jump to the treatment most likely to work; I don’t want to prove 3 things won’t work first. I completely and logically understand why it’s best done that way, but I’m exhausted. Physically and mentally drained. And now that the adrenaline of this admission is starting to subside, my thoughts turn to the to-do list at home.

I’m not sure how many more gram-negative sepsis events my sweet girl has in her, but it seems at least one more. Thank you so much for your support over the past few weeks. Your comments and prayers were read and heard… each one meant more than you’ll ever know.

I’ll continue to update, but can safely say Eme is now “out of the woods” on this one 🙂

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Tuesday

Things are moving in the right direction… mostly… I think. Emerson remains on BiPAP, but we’ve been able to come down on her O2 settings. She is weaning off sedation drugs from intubation. She even got out of bed and stood on her own two feet this afternoon. She was very shaky, but she did it.

Those darn kidneys though! They continue to act up and stump everyone. Lots of doctors are involved & several met this afternoon to discuss what is happening and where we go from here. They’ve done umpteen tests and nothing is adding up. We know Eme has central DI, and we think she has a salt wasting syndrome, but there’s something else going on too. I just had a long conversation with the PICU attending and there are some interesting new theories and developments. I’m very encouraged. Stay tuned for more on that…

Eme’s heart rate remains very low and she’s bleeding from several sites – mostly underneath her skin (I’ll spare you the pictures, they’re not pretty). She went into DIC with this infection and we are seeing the fall out from that now. DIC is an acute, potentially life-threatening blood clotting disorder that can occur in the face of sepsis. She’s only gone into DIC a few times, which underscores how serious this infection was. Her numbers are improving, though, and the bleeding should resolve. Hematology is watching closely.

Otherwise, Emerson has been sleeping much of the day; recharging her batteries I’m sure. She doesn’t have much reserve, and the events of last week hit hard. It will take her a while to regain her strength… until then, we take little baby steps – push a little, but not too hard – and wait for those kidneys to wake up!