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 🙂

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!

It was a mostly quiet day today. A chest x-ray this morning revealed that both of Emerson’s lungs are collapsing; they increased pressure support on her BiPAP machine to help open them up. With the increased support, Eme’s respiratory status was stable today.

She is still confused, but was much less agitated today. She was only awake a very short period of time though. Despite aggressive weans on her meds from intubation, she slept almost the entire day.

We just had our single largest hour of urine output since admission. There is no plateau even in sight for this DI crisis and everyone here is at a loss for what to do next. Several kidney doctors have consulted, endocrine, the PICU team – all are stumped and say they’ve never seen anything like this before (if only I had a dollar for every time I’ve heard that!). We tried a new drug today, but it didn’t seem to have much, if any, impact.

Eme’s heart rate is dipping into the 30s tonight, even while awake. It keeps drifting lower and lower and the team keeps adjusting the number at which they’re concerned lower and lower. They say as long as she’s perfusing and her extremities are warm (which they have been), they don’t want to intervene; just watch. We’re getting into numbers now, though, that I’m a little uncomfortable with. It seems to me that much lower than this and the crash cart needs to park itself outside her door… just in case.

All in all it was an okay day – some things a little better and the rest pretty much status quo. I went to the gift shop and bought a few picture books, curled up next to her in bed, and read to her while she drifted off to sleep. A lazy Sunday, the best kind 🙂

The news tonight is only so-so. Emerson extubated to BiPAP yesterday afternoon (I said CPAP, but I was mistaken – she’s on BiPAP receiving 2-way pressure and rate of breathing support). She did okay overnight, but her work of breathing and oxygen requirements have been increasing all day. She’s at 5 liters now and still sating mostly in the low 90s.

Then there’s the psychosis… She hits me, pulls my hair, and tells me to go away. She says she only wants her mom and I don’t look like her mom. She thinks she’s still at the beach and talks about the ice cream she left in the freezer there. She got very upset at the nurse today for eating it. She talks to her brothers and her cousins. She tries to get out of bed to go to her bedroom. And more… She slept all day, popped up every 5-10 minutes, and then fell back over to sleep. All. Day. Long. They started IV Haldol this afternoon.

It leaves me wondering about her “episodes” while on the vent. We (myself included) attributed them to inadequate sedation. Based on the patterning of those events, though, & how similar they were to the events of today, I’m wondering if those were episodes of psychosis too.

No one is sure what’s causing all this, they only say “it happens”. They also don’t know how long it will last, only “not forever” – maybe a few days, weeks, or even months (to a lesser degree). As with everything, we’re on Eme’s time.

No improvement in urine output today; we continue to sit, support, and hope tomorrow her body starts to concentrate it. Until then, we’re left chasing electrolytes and trying to manage her fluid status. Same game, different day…

Emerson failed another breathing trial overnight. She pushed through one this morning, though, & successfully extubated to c-pap late this afternoon. The vent remains in the room to “ward off evil spirits”, but all indications are that she’s good!

There was thought that Eme may have been displaying moments of psychosis in the past several days, & once the tube was removed, that thought was undeniably confirmed. She doesn’t know where she is, she doesn’t recognize me, she sees and hears her brothers (who aren’t here)… and much more. She’s been sleeping since extubation, but startles periodically to pop up in bed and say very bizarre things. The team promptly consulted Psych, who started meds and will see her in the morning.

Otherwise, Eme remains in a DI crisis – on ICU drips and electrolyte replacements to manage exceedingly high urine output. The daily fluid shifting in her face is impossible to ignore; her eyes are puffy one day & sunken the next, puffy the next day, then sunken by night. Her body is less variable, though, as fluid has seeped into her tissues and she looks bloated throughout. It’s a difficult disease to manage and this crisis hit Emerson especially hard. There’s no telling when things will turn around; we can only support her now and wait.

There wasn’t much new in Emerson’s condition or support today.

We did a breathing trial on the vent to test her lungs in preparation for hopeful extubation, but she failed. We also had to go up on vent settings. Her lungs sound “okay” though &, given that, plans are to move forward with pulling the tube.

It has become nearly impossible to keep Emerson properly sedated. The number & dosage of meds she’s on is alarmingly high for her size and she’s still breaking through. While awake and thrashing, though, she is riding the vent. It’s very strange & no one is quite sure what to make of it – she has enough energy to throw herself off the bed, but not enough energy to breathe. We lowered her vent settings to more or less force her to breathe, but she was unable to adequately maintain her respiratory status and we had to increase mechanical support.

There is a theory that perhaps she isn’t ‘waking up’, but rather displaying moments of psychosis. I’m not sure; amidst flailing her arms & legs and grabbing for her tube, I can ask her questions and she will nod her head “yes” or “no” appropriately. I don’t know what’s going on, and everyone here is more or less postulating at this point because they don’t either. Concerns and hesitations aside, we are going to attempt to extubate to c-pap tomorrow.

Emerson’s crisis continues, but the team has a handle on her needs and they’ve stabilized her. She remains on lots of support, requiring drips for her heart & kidney function and lots of electrolyte replacements, and her urine output remains very high. Not much has changed there. The team has had time to digest her unique presentation, though, gather input from specialists, and devise a plan that, for now, is addressing her needs.

There’s been discussion about attempting to remove Emerson’s breathing tube later in the week. After successfully drying herself out over the past day and a half (25 liters/25,000 mls of urine output… and she weighs only 68 pounds… crazy!), we’re hoping a window has opened up for successful extubation. Her chest x-ray still shows some areas of concern, but we’re moving forward with vent adjustments to see what she can do. Each day on the vent carries with it an increased risk for ventilator-assisted pneumonia – a complication we cannot afford right now.

Overall, things today are quieter and better controlled; a welcome change from the chaos of yesterday. Throw it on top of zero sleep and it was a rough day. Emerson still has a lot of hoops to jump through, but with stability comes time. I can only hope and pray that nothing else is lurking around the corner…

I so appreciate all your support and don’t want to leave you without a quick update. Emerson has had a critical and very difficult 24 hours. They’ve identified e-coli in her blood cultures in addition to Klebsiella and co-ag negative staph. Antibiotics are, by all accounts, treating the infection; but managing her organ system fallout from it, now, is proving to be a significant challenge.

Infection isn’t necessarily Emerson’s biggest threat. ID doctors are very good at finding drugs (or a combination of drugs) to treat just about anything. It’s recovering from the hit of infection that may ultimately prove to be insurmountable for her.

Eme remains intubated this evening on many med drips – some maintaining different organ functions, others treating critical electrolyte imbalances. The PICU doctor is pretty confident she’s developed cerebral salt wasting syndrome on top of DI. Together, & despite many drugs to prevent it, she had over 10 liters of urine output today. The consequence of that has been overwhelming and very difficult to manage. Her eyes are dark and sunken, but her little body is still puffy and retaining fluid.

I was expecting a crisis but never could have anticipated the vengeance with which it would arrive. Many many people have been involved and I’m thankful for a caring and compassionate staff that has also been caring for me; although my only focus, now, is on her…

It’s a new week… Ventilator support was increased over night & Emerson continues to let it do all the work – she is not spontaneously initiating breath, even when awake and agitated.

They were able to get some urine by titrating a drip overnight, but output is trending down again this morning. She has a lot of fluid building up in her little body, and it will be difficult to improve her breathing status until we eliminate the pressure it’s creating and drain it from her lungs.

The plan for today is fluid management. There will be no breathing trials and Emerson will not extubate. Instead, they’ll keep her comfortable on the vent and work towards gently correcting her fluid status. It’s a delicate balance with her DI issues, as overshooting means trouble maintaining critical electrolyte levels.

Infection markers are heading in the right direction with the exception of lactate, which has been elevated and fluctuating for a few days. All signs, though, are that we have a handle on the infection and now just need to support her through the fallout of septic shock. It could be a challenge, but she’s done it before and will do it again – in her own perfect way and time…

Plans for removing Emerson’s breathing tube have been pushed back. She continues to ride the vent, and attempts to stimulate her today were unsuccessful. All further trials have been suspended and everything will be re-evaluated tomorrow morning. We’re focused now on keeping her comfortable overnight on the vent.

The second organism growing has been identified as a coag-negative staph – it’s a fairly “wimpy” bug, all things considered, & is unlikely to be causing her symptoms. What she is fighting is Klebsiella sepsis and it’s initial hit, septic shock.

Eme’s kidney function decreased throughout the day and managing her fluid status has now become a primary concern. As fluid accumulates in her body, the likelihood of a successful extubation decreases. They’re changing meds around – stopping home meds & starting a drip – in hopes they can increase her urine output. Unfortunately more “standard” methods of diuresing are not options due to her underlying diagnosis of DI.

Thank you so much for your kind & supportive comments. I feel like we’ve been thrown back into a firestorm, and each one reminds me we are not here alone. Thank you 🙂