Catching up

For anyone unable to access Facebook & Emerson’s site there (“Pray for Emerson!”), here are posts from the past 4 weeks:

June 20, 2015
Emerson spiked a high fever on Thursday evening &, after a rough night in the ED at Denver Children’s Hospital, was transferred via life flight to Omaha Friday morning. She is in the PICU under the watch & care of her transplant team today as we await further identification of the bacteria growing in her blood. After brief observation, Eme was taken to the OR for a new central line last night. Unfortunately that procedure proved to be a difficult one, as we battle to save her last remaining site for central access. Her veins are weak & her skin is compromised on account of significant scar tissue from all her previous lines & extensive intervention over the years – indeed this journey is taking it’s toll. We have a working line this morning, though, and while she doesn’t “look” so good, her vitals are stable. She is receiving a second IV potassium bolus now & will be getting a blood transfusion soon. The team here will continue to monitor Eme closely and support her as needed. As her surgeon said this morning, “We just need to be patient & give her some time… she’ll come around, she always does” :). In the meanwhile, I’ll update when I can. I am without my computer right now, though, so lengthy blog updates will be tough. When I do get my computer I’ll post some pics from happier (& healthier) times over the past few months :). Thank you for your support and prayers… now & always…

June 21, 2015
A new line + 48 hours of antibiotics = Eme is more alert this morning & feeling a little better. She’s still requiring frequent IV potassium boluses & is getting a magnesium bolus this morning as well. Her blood counts are up after yesterday’s transfusion, though, & her temp is down. All in all we’re heading in the right direction. Thanks for checking in & Happy Father’s Day to all the dads here and in Heaven. I trust God is hosting a grand party for those whom we cannot celebrate with ourselves πŸ™‚

June 22, 2015
All blood cultures drawn (from Eme’s line and peripheral pokes) have returned positive for the same bacteria. That is significant to confirm that the infection was not isolated to her line, but had spread systemically throughout her body. She was very sick… I wasn’t surprised. She is on the right antibiotic, though, and now we just have to be patient and give it time to work. Emerson is still sleepy, but alert and interacting appropriately when she’s awake. While we appear to be effectively treating the infection, though, her #1 nemesis has returned – potassium regulation (or the lack there of). Ugh!! Add to that difficulties maintaining her magnesium levels and Eme is more or less on an IV drip of critical electrolytes. It seems to be the game we play when she is sick – an exasperation of her underlying condition(s), increased urine output, low electrolyte levels, difficulties maintaining proper doses of important medications. So, as always, we are right where she needs to be, & the team here will support her through this… And I will say a few prayers that this somehow all resolves quickly so we can get back to our summer plans!!

June 23, 2015
Yesterday shaped up to be a 2 steps backwards kind of day, sadly. Emerson became increasingly dehydrated & lethargic… Urine output went up & potassium levels went down. By mid afternoon we couldn’t get her potassium level up even with continual IV boluses. This morning her level was critically low while actively recieving a bolus. It’s become a problem. A vasopressin drip was initiated last night to help control her urine output. She is losing potassium (& other electrolytes) in her urine – the more she pees, the more she loses. We are chasing our tails this morning, trying to get her what she needs & correct the cycle that has begun. It is all eerily reminiscent of her last admission & I’m very thankful to be with the NPs & nurses who managed her though it last time. Emerson’s way of doing things doesn’t always pass the test of medical reason & explanation! Unfortunately, though, that also puts me back in the role of advocate (as in “crazy mom” advocate) with those who weren’t involved last time. Everyone is trying to help, I know that. If we don’t interact quickly and properly, though, we’ll be here the rest of the summer trying to turn this all around. And I definitely don’t want that!! It’s a very difficult part of this journey – advocating (proper advocating at least, striking an appropriate balance of persuasion & respect) is hard & exhausting. And this morning I’m tired!

June 25, 2015
Things are stable & labs were a little better over night. Emerson’s requiring a significant amount more vasopressin than last admission (over 10X the dose!), but it’s doing it’s job. She is still pretty lethargic & sleeping much of the day – we’re trying some extra fluid today to see if that will perk her up a little. I suspect it will πŸ™‚ There is a care conference scheduled for tomorrow to discuss where we’re at, where we’re going (how we get there), & options for outpatient treatment. As it currently stands, Eme would require 8 shots a day to manage all this at home (assuming we can wean her vasopressin a little this week, if not it could be more). Her tissue is hard and lumpy from the 6 shots a day she’s been getting for 6 months. 8 a day will be tough. I’m hoping there may be an IV alternative medication that I can administer through her central line. Of course it wouldn’t be ideal, but I’m afraid the best of the bad options is the best we can do – that’s where we’re at with her. Ugh! 12 more days of antibiotic treatment for this infection… hopefully we can get everything else put back together in that time frame. First thing’s first – gotta get her off this vasopressin drip & out of the PICU. So far efforts to wean the drip have not been so successful. Labs look a little better, though, & she’s requiring fewer replacements today… hopefully we can start making progress on the drip soon! Slow & steady wins the race with Emerson… always has πŸ™‚

June 26, 2015
A 1 step backwards night/morning (at least not 2… that’s a little progress I suppose). Urine output is up (not good), electrolytes are lower (not good), she’s requiring more replacements at higher amounts than yesterday (not good), & white count is trending up (a marker for infection & also not good). Hmmmmm…. She was more awake and alert yesterday, though, so that was good. The concensus is that she was much sicker last week than even her blood work indicated. That can happen in her condition. She usually mounts a pretty good response to infection, but for whatever reason last week she did not. She was very sick clinically, mind you, but lab markers for infection were only mildly elevated. She may be rebounding a little now &, in general, is just needing more time to get over this infection. Not a huge concern, she’ll do it. We just have to ride the wave with her… In the meantime, I’m brushing up on all things American Girl. Her new favorite pastime is watching American Girl movies (who knew they made feature length films?!?). We watched 2 yesterday. And Teen Beach Movie 2 debuts on Disney tonight at 8… I can hardly contain my anticipation and excitement!

June 27, 2015
Frustration is the name of the game through most hospital stays – fear/concern, lack of sleep, & a yearning to be elsewhere all add up to turn even the sanest parent into a crazy person! It’s especially difficult with a child, like Emerson, who’s care plan is never straightforward and who’s recovery timeline never follows a predictable course. She’s special (in many ways :)) & always a challenge to treat.
Tonight I want to acknowledge a special PICU doctor who took on Eme’s care this week. It is easy to walk away or claim ignorance, but he didn’t do that. Instead he researched & read. He talked to specialists & he got involved. He was willing to step outside the box and try unconventional things – “she’s in the PICU, we can handle whatever comes up”. Indeed, Emerson is an out-of-the-box child & her treatment needs to be the same. Conventional care plans don’t work & only lead to extended hospital stays and difficulties at home. We tried the first of his “plans” tonight &, sadly, it didn’t work. He promised he’ll be here tomorrow morning, though, with another one.
In all, as I wrap up a difficult week I want to focus on the positives & acknowledge those who cushion the tough times for us… those who see Emerson’s incredible spirit and work tirelessly to give her more good days… and those who see my weary soul and lift me up with compassion and HOPE.
We’ve crossed paths with many incredible professionals over the years & tonight I want to single out one…
To our PICU doctor this week – Thank You!

June 28, 2015
I’ll spare you all the details and say only that yesterday was a rough day. In an attempt to correct a critically low sodium value, Emerson’s body overcorrected with a sudden and significant swing in hydration status and electrolyte balance. It affected the fluid around her brain and manifested itself as a severe, debilitating head ache with nausea and vomiting. The PICU doctor came in from home and, with others, spent several hours trying to re-correct her electrolyte levels and manage the fall-out from it all. We’ve been closely watching her mental status, as brain damage is possible. She’s been very restless and hasn’t yet slept at all (not even 5 minutes of sleep over night). She was delusional last night but remained aware of who I was and where we were. Things have quieted down this morning & I’m desperately hoping she’ll find some sleep (very) soon! We are both exhausted!! Any change in mental status now is difficult to interpret. She had a head CT this morning and, luckily, there is no evidence of a brain bleed. In all, doctors say it was a significant insult and her body needs time to recover. For today the goal is stability – no changes, just rest & stability. For tomorrow? I have no idea where we go with all this. Emerson’s requirements this admission are significantly increased over last time and she’s still having problems. I have no idea how we manage this here, let alone at home. I’m thankful for the doctors working hard to find some combination of something that will help & I’m continuing to rest on faith – faith that it will all come together. And hope – hope that it will happen soon.

June 29, 2015
Emerson slept & slept & slept… And I did a little too πŸ™‚ She was awake only a few hours last night & this morning and in that time was interacting appropriately. Delusional behavior has resolved.
The potential still exists for long term complication/impact from the weekend’s events, but it appears that it will be minor at most. Phew – another crisis averted!
Eme’s sodium is too low again this morning which has everyone on alert. They are attempting to correct it this time, though, in a different way.
We’re hoping to trial some new drugs this week in an attempt to get Emerson off the vasopressin drip and closer to a regimine we can maintain at home. Plan “A” is somewhat straight forward… beyond that it could be tough to pull this all together. Hoping plan “A” does the trick!
We can’t do anything, though, until we balance her electrolytes & get her sodium up. They’re working on that now.
All in all, it’s a quiet start to the week as we try to make up lost ground from over the weekend. Several doctors have said that ‘in all their careers they’ve never seen anything like what happened to Eme on Saturday’ – if only I had a dollar for every time I’ve heard that!!

July 1, 2015
We had hoped to trial a new IV drug Monday, but Emerson was (apparently) not ready yet – her sodium levels remained too low & we were unable to do so. She got several boluses of 3% IV sodium Monday instead.
Yesterday the team decided to take a leap of faith & give it a try. They were very cautious on account of Emerson’s electrolyte instability and also the chain of events that transpired last weekend. As such, we’ve been measuring urine output every 30 minutes and drawing labs and testing urine every 60 minutes – for the past 24 hours, even all through the night! Needless to say, it’s been a revolving door of activity!!
It was a wimpy trial at best. We added a new drug, but didn’t take away the drug that has been managing her thus far. Really, then, it didn’t test whether or not the new drug would work effectively, but rather just that it was “safe”.
Emerson had problems with her potassium levels over night, requiring several boluses, but her sodium level remained out of the critical range (a good thing!). We are progressing to the 2nd phase of Plan “A” this morning – lowering her vasopressin drip a little to see if the new drug will actually do what we’re hoping it will. If electrolytes remain (mostly) stable for the next 24 hours we’ll lower her drip a bit more tomorrow. In all, it will be several days of very small adjustments before we know whether or not the new drug will work well enough to stop the vasopressin drip.
Weaning Eme off the drip would be a big step towards discharge. Progress is slow and we’re still a ways away… 2 steps forward, 1 step back seems to be the way it goes. It’s progress, though… & I’ll take it! The new PICU doctor this week is great πŸ™‚ I’m very thankful – it takes away a lot of anxiety and frustration and makes a very difficult situation a little easier to endure!

July 2, 2015
The new drug is working… not perfectly, but well enough that we’ve been able to make more progress on weaning down the drip. Labs are marginal, but adjusted expectations have kept the team from intervening as often. Emerson is feeling good and has 5 more days of antibiotics to treat the original cause for admission – a blood infection.
There is a new PICU team on as they transition to the holiday weekend. Transition is always difficult & this one especially so.
I am exhausted – mentally & physically drained, and not in a way that I need sleep or a 30 minute β€œbreak”. I’ve been fighting back tears all day & am afraid if they start they may never stop. It’s been one of those days.
This is honestly the loneliest journey. I’ve never been surrounded by so many people, yet felt so alone. Maybe that’s why I write – it’s my connection to the outside world. Imagine me standing on a rooftop and shouting for someone/anyone to hear. What sometimes surprises me most is the people who do… And the people who don’t.
I understand no one knows what to say or do, and everyone is busy with their own lives. I’m truly thankful for that – I wouldn’t wish this on anyone. I’ve always vowed to be open and honest through this process, though, and the honest truth tonight is that I’m feeling sad and alone. Sitting in my little red recliner, listening to fireworks outside, & wishing upon a star that we were somewhere else.

July 3, 2015
Wow – Your kind words and thoughts came when I needed them most this admission. The genuine compassion from those who’ve followed us for so long, many only a name and a profile pic, never ceases to amaze me. All together, it reminds me of that which I’ve learned on this journey – despite news & media reports that might suggest otherwise, people in this world are overwhelmingly selfless and good πŸ™‚ I am truly blessed.
It is quiet here today – in this room, at the desk, in the halls, and in the cafeteria. It is officially a holiday and many/most are home enjoying time with their families. Although difficult to be here, it is somehow easier to accept “quiet” when it is quiet everywhere. It is much more difficult & frustrating to accept “quiet” when everyone is gathered nearby, but unwilling to talk.
Emerson’s Endocrinologist is coming over from Children’s Hospital this afternoon and I’m hopeful his input will help to move things along here. Otherwise, no plans today… Emerson is still requiring the vasopressin drip, but at a lower rate. She is happy and (surprisingly) not bored, just content. Happy long weekend to all!!

July 4, 2015
Emerson weaned off the drip last night and the new IV drug that replaced it appears to be doing the trick. The doctor is cautiously encouraged this morning with fingers crossed for a good day. He’s happy… & if he’s happy, I’m happy too!
They are able to measure break-thru symptoms to insure proper dosing of the new med and, as luck would have it, we may have found her “sweet spot”. She’s starting to break through about an hour before her next dose, which is nearly ideal.
There’s a bit more to address, but all in all things are looking pretty good this morning. They’ll watch Eme closely on the new drug for several days (it’s a potent drug & IV administration at home is nearly unheard of), tweak this & that, then hopefully get us out of here! No one is willing to say the “H” word just yet, but I’ve got my sights set on next week πŸ™‚
Happy 4th of July to all our American friends!! And happy happy Saturday to everyone else πŸ™‚ Much love to all for a safe, relaxing, & fun-filled weekend! We are stuck in the hospital, but with a much improved spirit… all is well πŸ™‚

July 6, 2015
At the moment, we find ourselves stuck somewhere between good & not so good – the drug is working, but not as well as we’d hoped… Emerson’s still requiring potassium supplementation, but not as much as before… sodium levels are more stable (good)… but she’s having episodes of low blood sugars into the 40s (not so good).
All in all, it will never be perfect, but we’re hoping to settle somewhere a little better than this. We’re close, but not quite there yet…
It would seem that everything happening now is tied to Eme’s Endocrine issues & we have a plan to address low blood sugars tomorrow. One thing at a time.
It doesn’t look like she’ll discharge this week, but maybe next. Until then, we’re keeping current on anything & everything Disney and narrowing in on our fav cafeteria foods (tacos for lunch & Subway for dinner). And as can happen with electrolyte & endocrine (hormone) shifts, and low blood sugars, Emerson’s been a little moody and emotional… which is giving me a little extra practice in patience and self-control πŸ˜‰ It’s been a long almost 3 weeks, but there’s a (dim) light at the end of the tunnel πŸ™‚

July 7, 2015
I used to consider my propensity to “plan & prepare” a good thing. Alas, no more – the ups and downs and curveballs of this life have seriously forced me to re-evaluate my strengths & weaknesses!!
Emerson’s central line broke yesterday (no idea how). It was repaired & promptly used, as Eme relies heavily on 2 working lumens to get all the nutrition, meds, and electrolyte replacements she requires.
Well… Apparently it broke again overnight, but no one noticed until this morning. Which means nurses were infusing through a broken line all night. Which is a big no no & poses a significant risk for infection.
The line is now “dirty” and not suitable for another repair. Blood cultures were drawn & Emerson is in the OR/IR getting a new line. Hopefully the anesthesia she’s getting won’t set back our progress much. If, however, she develops another blood infection it will take us back to the beginning of this admission 3 weeks ago. She will be back on a vasopressin drip and we will have to do this all over again.
We’ve had a close eye on her today & there are no clinical signs of infection thus far. No fevers, no whacky labs, nothing to suggest we have a problem… yet. It can take a few days to rear its ugly head though.
I have no words. Unbelievable!

July 8, 2015
So far so good. Line placement went well & blood cultures remain negative at 24 hours. They’re not considered “final” until 48 hours, so we have 24 more to go… but so far so good πŸ™‚

July 8, 2015
IF IF IF cultures remain negative today, “plan” is to transfer out of the PICU tomorrow & “h” next week Monday or Tuesday!! Woo Hoo πŸ™‚ Blood glucose was more stable overnight & potassium, while not great, is good enough. Now, I know better than to plan… so I’ll call it a hopeful course of events & will save searching for a plane ticket until this weekend πŸ˜‰

July 13, 2015
Sorry for the silence, but things have been up in the air here & I didn’t want to say much until some decisions had been made. I’ll update with more information soon but, in a nutshell, we will not be going home this week. Emerson simply is not in a place that she can safely discharge to home & I’m not willing to accept that there’s nothing more that can be done.
So… after much research and discussion, and ultimately a meeting amongst all transplant surgeons this morning, Emerson is going to the OR for a “bilateral native nephrectomy” – surgical removal of both her native kidneys. It’s common practice to leave native kidneys in place with a kidney transplant, but is thought to be causing problems for Emerson. She’ll be going for a nuclear scan today or tomorrow & surgery is tentatively scheduled for Thursday.
The surgeon will open her up (laproscopic removal is not an option), and is hoping to enter through Emerson’s back so as to avoid going through her transplanted graft. Recovery time is largely unknown as this is something they’ve never done, but most are guessing 4-6 weeks.
More to come…

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