Emerson’s trip to the OR went well yesterday… she was very happy to wake up & has moved on to obsessing about other things now :). The brain MRI showed atrophy, which didn’t come as a big surprise, but no tumor – a relief!

After a valiant effort in the OR, we were saddened to learn that Emerson has lost yet another access site for central line placement. It leaves her now with a line in her very last site – a right internal jugular (neck) vein. It may all be a little foreign to my non-medical friends, but it is of significant concern. The loss of central line site access post-transplant is ultimately a life-threatening/life-limiting condition. We will do our best to protect this last site, though, and save that worry for another day…

Emerson has been having pain in and around her right kidney and we’ll try to sort through that today. She’s not feeling so hot this morning and, despite an incredibly high pain tolerance, all indicators this morning are that she’s pretty uncomfortable.

In positive new, though, we seem to have Emerson in a stable place with her electrolytes (requiring a ton of supplements and meds, but stable) & are formulating our exit plan today!! We’re booking a flight home to Colorado for next week…

There’s no place like HOME for the holidays!

Happy Belated Thanksgiving & Merry Holiday Season to all!! I apologize for the lack of updates, but there hasn’t really been much to report…

Emerson remains in the PICU – off intestinal feeds, on IV nutrition, & hooked to monitors measuring her heart activity in the face of unstable potassium levels. As you may know, potassium is a critical element in our body and is crucial to proper heart function. Our bodies have a miraculous way of regulating potassium to within a narrow margin at which our hearts beat regularly. Potassium levels too high or too low cause irregular heart rhythm and can be life threatening. Emerson’s little body, sadly, seems to be losing the ability to regulate many critical elements including potassium. The team is trying hard to determine what she needs and to regulate her levels with replacements. It’s a very tricky undertaking, though, as our needs are not static throughout the day and there are many variables that affect it all. It has been a slow & arduous process trying to pinpoint exactly what she needs and when, but we’re getting close.

In addition to potassium instability, Emerson’s outputs are still too high, she’s having trouble maintaining an appropriate water balance in her body, and her blood sugars have been low (despite a significant amount of IV glucose infusing into her body around the clock).

Add it all together & it’s prompted the team to order brain imaging for tomorrow morning. “We don’t want to go fishing, but we need to look into why she’s having so much trouble right now… especially in the absence of another, plausible cause” – that was the word on rounds this morning. They initially believed this was all kicked off by a bout of the stomach flu. Five weeks into the admission, though, & it’s becoming more difficult to explain. On the list of things they’ll be looking for include a tumor in the pituitary/hormone-regulating region of her brain. The prospect of that is concerning, but I’m choosing to believe that we’re simply ruling it out ;).

The plan for this week, then, includes a brain MRI, a trip to the OR for a new central IV line, more tweaks to her potassium and other meds, and (maybe maybe) an initial contact with our home health pharmacy. Yes… HOME health! We’ll have to return after the holidays, but everyone is working very hard to stabilize Emerson enough that we can travel home for Christmas. We’ll accept some risk, certainly, in doing so but are willing to take that risk to be home together this month, even if only for a few weeks. We never know which holiday will be Emerson’s last – we treasure and fiercely protect every one right now. If all goes well, we hope to fly home next week and will return to Omaha after New Year’s. Emerson will re-admit at that time and we’ll pick up where we left off… trying to sort out her electrolyte/hormonal imbalances and work back to intestinal feeds.

Medical stuff aside, Emerson is ready to go home & misses her school friends terribly. She is very sad (as in big crocodile tears sad) that school will be out for winter break when she gets home & asked the surgeon today if she can “please please PLEASE” go to school for a week before coming back in January. The surgeon said yes :). I’m very thankful to this team for helping us find that delicate balance between necessary medical intervention and quality of life.

In addition to feeling sad this week, Emerson is also feeling scared about going to the OR. With every passing admission she’s becoming more and more aware of what’s happening here. She had on-going conversations about it with her stuffed animal friends over the weekend and she’s been obsessively talking about it with me all day. Her fears are real and the conversations are heartbreaking… she should be consumed with thoughts of play dates… she should not be consumed with fears of death. But she is. Oh how I wish life could be different for her.

Emerson is on the OR schedule for mid-morning tomorrow and she’ll be taken to MRI directly afterwards. I’ll let you know how it all goes!

* & just to clarify – the central line placement scheduled for tomorrow is a routine procedure & one that Emerson’s been through many, many times before. In all, it carries a very low likelihood for complication. She doesn’t understand that, though, & is scared. 

Progress is painfully slow… Emerson remains in the PICU – some things are maybe a little better, others maybe a little worse (or at least requiring more support). Overall the sentiment in rounds today was that we’ve made a little progress. That’s good, of course, but I’ll be honest – I’m having a hard time seeing how this all pulls back together for Eme. The comment made this morning was that Emerson more or less lives her life standing on the edge of a cliff (or hanging from her fingernails as the transplant surgeon professed) – one thing tips & it all falls apart. She “looks” good &, for the most part, she feels good. That’s the really good news. Looks, though, can be so deceiving. The level of support (mostly IV drips, meds, lab draws, and electrolyte replacements) she’s requiring to “look” good is confining her to a bed in the PICU & will continue to do so for a while at this rate.

We feel so blessed to have Emerson with us and equally blessed that she continues to smile and tell stories of her puppy Bella through it all. It is painfully difficult, though, to accept the price we all pay (including her) to attain it. I wouldn’t have it any other way, but that doesn’t make it easy. As I face another holiday spent apart from family, I am reminded that life goes on & I’m sad that, again, it will do so without us.

As Emerson & I sit in Omaha, we open our home in Colorado, today, to 2 boys/young men from Finland – both players on Collin’s hockey team this year. They’ll stay with us through Thanksgiving and a series of games the weekend afterwards. I’ve been planning and preparing (& looking forward to) their stay for a while now and am incredibly disappointed that I’ll be over 600 miles away through it all. I’ve reached out asking for help with meals and am very touched by the response – thank you all so much! I feel so blessed that you continue to walk this path with us, and that you so graciously pitch in to get it done when I cannot. Thank You!

And another giant Thank You to the students/families/staff at Kilmer Elementary School. Emerson’s class sent her a big box of goodies this week, complete with pictures & hand made cards (and an Elsa Build A Bear). They said they wanted to “make her smile” & they accomplished that in a big way!! She was so excited & misses everyone there so much. Rest assured she is doing everything in her power to get back to you as quickly as possible. She talks about it every single day!

Evening update: & just like that, all little progress has been lost 😦 We started a very slow drip of intestinal feeds this morning and Emerson failed miserably. Back to gut rest through the weekend. Sigh…

Emerson’s potassium level dropped to a new low Monday night (2.1 for my medical friends) and, after much commotion and little sleep, she was transferred to the PICU Tuesday morning. Emerson remains in the PICU tonight with only mild improvement in her potassium levels (mid to upper 2 range), general electrolyte imbalances, excessive urine output, and continued dumping from her ileostomy. She is on TPN, off intestinal feeds, and is receiving electrolyte infusions/boluses around the clock. The team, with help from Emerson’s Endocrinologist, initiated a continual Vasopressin drip Thursday to help slow her urine output, thereby hoping her kidneys could retain vital electrolytes and labs would improve. Three days into the drip, now, and urine output is better… electrolyte levels, though, are not.

I have no idea what we do or where we go from here. Emerson is requiring labs every 6 hours with IV potassium boluses after each, in addition to daily boluses of calcium, magnesium, phosphorus, and albumin – and all that on top of a TPN recipe chocked full of each. She is also requiring a 24-hour IV drip to control massive urine output and prevent dehydration. She was admitted 10 days ago with increased output from her transplanted bowel. That continues, but now we are left with a problem in her transplanted kidneys that has taken over and changed the face of this admission.

No one knows what is happening or why. All tests for things that could be affecting Emerson’s bowel have returned negative, thereby leaving us with the probable diagnosis of an unknown virus. Could that same virus be attacking her kidneys too? The general consensus is that it’s unlikely, but they have so few patients who’ve received Emerson’s exact same combination of organs that I’m not sure anyone really knows.

As I sit here tonight, watching the snowfall outside, I am deeply saddened at the prospect of a lengthy admission through the holiday season. To be honest, I can’t even think about it for fear my stomach will twist into knots and my eyes will well with tears. There is so much I was looking forward to this month, and I’m trying to come to terms with the fact that I won’t be a part of the plans I put into place. Life will go on without us at home, I’m just deeply disappointed for all I will miss. Still, though, I know where I am needed most and that is exactly where I sit tonight – back in a little (this time blue) recliner at the side of Emerson’s PICU bed, comforting her and advocating on her behalf. This is not an easy life, nor one that I chose, but it is the life I live. There has been much pain and heartache, but the depth of love I have felt and the appreciation for life I have gained could never be matched.

At the end of the day, and as news that the most recent & sickest Ebola patient yet arrived at the Nebraska Medical Center this afternoon, I am reminded that we are at one of the very best hospitals in the country. And I am comforted to know that my daughter is in very good hands…

She’s out and resting comfortably. The plan now includes potassium, antibiotics, TPN, and cardiac telemetry.

Thank you so much for all your thoughts & prayers. I’m hopeful for a quiet evening… tomorrow’s a new day.

Emerson’s blood potassium continues to fall and is critically low this morning. She lost both peripheral IVs overnight. She received 5 more shots to prevent tissue death around a bad IV this morning & will be getting 5 more here soon – that brings the total count to 19 shots in the past 24 hours (& that’s in addition to IV pokes and scheduled med injections). Nurses were able to get a very small IV in a very small vein for dextrose to keep her blood sugars up. She has no access to treat the low potassium.

She’s going down to the OR ASAP for central line placement. We’re between a rock and a hard place now, because her potassium level is too low for the anesthesia necessary to place the line… she needs the line, though, to get the potassium. Doctors are talking while I type.

No one here takes line placement lightly for Eme – yesterday the sentiment was “no way”, this morning it was “no choice”. History would prepare us for a domino chain of events now including infection and septic shock. I’m hopeful it won’t happen and am trying to stay focused on the here & now… one day, one hour at a time.

In addition to low potassium, Eme’s white count jumped over night & she’s developed an infection in the remaining nail bed of a toenail she picked off yesterday. It looks pretty nasty. They’re planning to remove that nail bed and will attempt to clean out the infection while she’s under this morning.

A little prayer would be appreciated… Nurse just got off the phone, she’s going now! I’ll update again this afternoon.

IVs = problematic / Potassium = low / Anxiety = high. Ugh!

Those 2 IVs we were hoping would get us through the weekend? 1 is gone & the other is barely viable. Emerson received yet another round of (this time) 5 shots to treat infiltrated potassium in the tissue around a bad IV this afternoon. And… with, literally, no sites left above her abdomen, she now has a new IV in her foot. And that may be the very last peripheral IV they’ll be able to place. I can’t imagine the other one will last through the night and, if it follows suit with all others, the one in her foot will be gone tomorrow. I have no idea what we’ll do then… She has very small & weak peripheral veins and the medications she’s requiring now are very hard on them – if we can really pull this off with peripheral IVs it will be a feat!

All Eme’s electrolytes are low and potassium levels now are presenting a problem. She’s been receiving continual boluses of IV & enteral potassium replacements, but her numbers continue to drop. Potassium is a critical element in our blood and low levels can be very dangerous. High levels can be equally as dangerous, so they’re making sure to not over-correct… no matter how much we put in, though, she doesn’t seem to respond. They are watching it closely.

Finally, while electrolyte levels are low… Eme’s anxiety levels are HIGH! She’s picking again and has completely removed several toenails and is working on her fingernails too. Yuck!!

It was busy here today, but we squeezed in some snuggle time to watch a Christmas movie this afternoon :). There’s cold weather on the way and the season is upon us – only 6 ½ weeks to go! Sooooooo hard to believe!!

To the best we can conclude, it’s a virus (as I suspected). Biopsy results returned negative for rejection today and cultures for all known viruses are also still negative… so we’re left with a probable unidentifiable viral infection – hopefully it’s not the bad one, but it’s certainly shaping up to look like it could be :(.

Dumping continues & even, arguably, worsened last night. Emerson lost an IV this afternoon and received a series of 4 shots to prevent tissue death around the infiltrated fluids (not fun). They placed another IV to leave her with 2 going into the weekend – there’s a limit to how much you can run through 1 IV & her needs are big and growing… we’re hoping that 2 IVs will allow us more options over the next several days. We’re running (very) low on peripheral IV sites & are hoping these 2 will get her through the weekend. Prayers that Emerson can avoid surgical intervention for a more permanent line would be much appreciated!

Labs weren’t great this morning, as this infection continues to take hold. The team ordered PPN (partial parenteral nutrition) to start tonight. PPN won’t give her everything she needs, but it can be administered through a peripheral IV & it will hopefully buy us enough time for her gut to recover a little. We’re hoping for a quiet weekend & will re-evaluate things on Monday.

I’ve decided to channel my inner Elsa & “let it go” for a few days… I can still salvage Thanksgiving as long as we’re out of here in the next 7-10 days. Fingers (& toes) crossed!

Welcome to our new home! Please take a minute to look around… “About” chronicles Emerson’s journey, in short and long versions… “Photos” tells her story in pictures… “Home” is where you’ll find current and past journal entries… and if you click on the double arrow at the top of the page, you can sign up to follow this blog & receive email notifications when I post a new entry.

I hope you love this new place as much as we do, it’s been a work in progress for a while now! We are so thankful to COTA (Children’s Organ Transplant Association) for all their support over the years, but are making the transition now to a new phase in this journey – from life during transplant to life post-transplant. We’ve had a good year & Emerson has compensated well for all the varied health conditions she battles, but we know an event that tips the scales could change everything. Here I’ll chronicle the ups and downs of her on-going journey &, hopefully, give meaning to the importance of organ donation – without it there would be nothing to write.

Summer for us was busy and included many trips to the mountains, a weekend at Cedar Point, time at the beach in Michigan, and a week in Hawaii! Eme also participated in a ‘Special Rodeo’ (think Special Olympics, with horses) & won a medal for her performance in barrels – a highlight of her summer for sure!!

We continue to travel to Omaha monthly for IV infusions, blood draws, and appointments with the transplant team and other specialists. We’ve been doing it for a full year now & I’ll be honest… it’s tough. We’re certainly thankful, though, for this season of stability (something is working!) and the 3+ weeks at home between every visit.

In current news, Emerson just celebrated a birthday – 8 years old! WOW! Every year is a party we weren’t supposed to plan… a milestone we never thought she’d reach. Every year we stare a little longer and listen a little closer, so thankful for another year to watch her grow.

And in other big news – Emerson started school, attending half-day Kindergarten twice a week! She loves spending time with new friends, but isn’t so sure about the learning aspect of it all. She struggles with the work, which I suppose comes as no surprise given all she’s been through, but everyone at school has been wonderful in welcoming her into the classroom and helping her to stay focused and on task. She’s attending Tuesdays and Thursdays, as tolerated, but tires easily and will likely transition to homebound instruction through the height of flu season. Even now, though, the widely publicized out-break of Enterovirus D68 has us on heightened alert.

The decision to send Eme to school wasn’t made lightly. As always, we know a “normal” childhood illness can be dangerous for Emerson and we tread carefully when putting her into environments with other children. We know too, though, that Emerson is very social and that she craves interaction and input from other children. With that knowledge, we’re confident it’s the right decision for her… regardless of what happens. Emerson fought very hard for the chance to be a little girl!

Thanks for following us here! And if you’re new… Welcome! We appreciate all the love and support more than you could ever know 🙂