Sunday morning

And here we sit… initial cultures are now growing two different organisms; the first has been identified as Klebsiella. It feels a little like the schoolyard bully has returned. Klebsiella is the organism that plagued Emerson post transplant – it accounted for one cardiac code and multiple months spent in the PICU. We haven’t seen this bug for years and, sadly, its presence explains a lot. This bug made her very sick post transplant and it has hit her hard again.

Eme has not been breathing over the vent & a trial to stimulate her failed over night. She is tired. The word this morning is that she’ll stay intubated; we’ll stop sprint trials and reassess this afternoon. She’s stable, but there is concern that we haven’t seen the worst of it yet. Her lactate (a marker of perfusion) is trending up, which is concerning, & she’s starting to retain fluid. Her kidneys have not shut down, thankfully, but urine output is lower than expected. The team is consulting with different specialists today to address her home medications – some may need to be stopped temporarily as she works through this.

Emerson has at least 100 lives and I have no doubt she’ll draw on one this time, as she has many times before. We just sit patiently now & support her as needed. Thank you for your love and ongoing support.

More to come…

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Reality Check

Happy Summer! I hope this post finds everyone enjoying warm weather and lazy days 🙂 Our summer started out strong with big brother’s high school graduation, a few trips to the mountains, a short stay in Saint Louis, and a week at the beach with family. We were chugging along nicely, mostly oblivious to Emerson’s medical fragility, when reality stepped up to slap us in the face. Sadly Eme fell very ill, very quickly yesterday. She is in the PICU, intubated, & in septic shock. She’s growing gram negative rods in her blood. This one came out of left field for sure. She’d been doing well, running through sprinklers and playing games just the day before. She was so full of life… smiles & giggles (& grimaces too). Today she is silent, and summer has come to a screeching halt. As I sit in my recliner watching her chest rise to the sound of a ventilator, watching numbers cycle on a monitor overhead, and listening to the sound of persistent alarms, I am struck by how quickly life can change – how quickly we can forget & how quickly we can be reminded. I suppose, in a way, the forgetting is how I survive.

All in all Eme is holding her own & she is doing “okay”. Her little body just grew very tired today & she could no longer maintain her oxygen levels without some help. She is following a pretty predictable pattern so far, and I suspect her recovery will look familiar as well. It’s a mixed blessing – good that we know what to expect, but very sad that this has happened so many times now that we can predict the course. Overall I’m encouraged that time between episodes has grown longer and that quality of life in those times has undeniably improved. It’s been a while since Emerson has been this sick.

The plan for tonight is to keep her comfortable and let her rest. Hopefully she overheard and follows the rules. I’ll update again tomorrow, but leave you with pics from happier times – feeding goats at Grant’s Farm in Saint Louis. They loved her, she loved them (and we followed all proper immune suppression protocol afterwards, of course)… summer fun!

 

 

Someone’s Having a Birthday!

10 years ago today & still several weeks from my due date, I walked into the doctor’s office for what had become a routine monitoring of a far from routine pregnancy. Everyone knew something was wrong – it looked like a problem with the baby’s digestive system, but no one could predict exactly what it was. Given that, they tried to keep me pregnant as long as possible, not wanting to complicate an intestinal problem with immature lungs. Recognizing that might be out of their ultimate control, though, I’d already received steroid shots to hasten her lung development if delivery couldn’t be delayed.

On that fateful day, 10 years ago, steroid shots on board, I sat in an oversized chair in a small room, hooked up to monitors… I drank juice and waited for baby to move. It had become a near daily exercise. Only on that day God had a plan. Emerson didn’t move. The doctor briskly entered the room to say it was time; “check in next door, you’re having your baby today”.

I could never have been prepared for the journey that began that day, and as I look back on the last decade of life, it feels surreal. The range of emotions has been vast and the decisions I’ve had to make, accompanied with the guilt for what those decisions took from me, has at times been insurmountable.

That being said, I’ve learned to stop blaming myself. Indeed life would be so much easier if we had a crystal ball; but we don’t. The most we can ever expect from ourselves is to make the best decision at the time a decision has to be made. And if we do that, it will ALWAYS be the right decision, regardless of the outcome. It’s easy to look back and wish we’d done things differently; it’s impossible to look forward and make a decision based on what will happen in the future. We can’t know. A decision made with careful thought and good intent at the time the decision is made is never the wrong decision. I know that is true and I’ve stopped beating myself up for time lost with my boys.

Indeed Emerson’s life has affected many. I’d be lying if I told you it’s all been positive, or that there weren’t days I wished she’d never been born. It’s ugly, but true. As we settle farther away from the firestorm, though, I can plainly see the impact her short life has had on us all.

I can hardly remember the person I was 10 years ago… it feels like yesterday and a lifetime ago all at the same time. I’m not perfect by any means, but I’ve learned a lot about myself and about life and believe I live stronger and love deeper as a result.

Emerson’s brother Collin, a high school senior, is preparing to study pre-med in college. He recently wrote, “Because of (Emerson), I have discovered a desire to help people: to impact other people’s lives in the same way that every single one of Emerson’s caretakers has impacted mine. Because of her, I am driven to make a difference in this world… to leave this world a better place for all.”

With a statement like that, it’s impossible to believe Emerson’s life and struggles didn’t carry with it great purpose. We are different people because of her and we will follow different paths in life because of hers. It’s impossible to wish she hadn’t come into our lives, when so much of who we are rests on the fact that she did. I would give anything to take the pain from her, but can never underestimate the depth of purpose she has given to all of us.

So yes – today we celebrate 10 years with Emerson. A milestone few thought she’d ever reach! And at 10 years, I’ve entered a new phase of this journey. Emerson is doing well and she spent all summer at home. Her last extended hospital stay was in the spring and the next one is (fingers crossed) nowhere in sight. Of course we know things can change very quickly, but we don’t think too far ahead. We live in each day and thank God every morning for yet another one.

It has been determined that Emerson’s intestinal graft is not working. She is on TPN, receiving 100% of her nutrition via an IV line placed in her chest. It is a painful reality but it means her transplant has failed, and with 2 transplants behind her and an impressive number of surgeries and interventions on top of that, she’s not eligible for another.

Luckily, though, she’s doing well on TPN, and aside from the hassle of having to lug around a heavy backpack and spend days tangled in tubes, she’s happy and enjoying life. She can’t live forever on TPN, but for now she looks good.

She attends school (2nd grade) 1 day a week and we homeschool to supplement the gap. She loves her iPad, her puppy, and her friends (and her brothers, she LOVES her big brothers), and she hates bedtime and has been caught ‘running away from home’ when she doesn’t get her way– a pretty typical little girl all the way around!

And us? We are a normal family with a slightly not-so-normal daily routine. Emerson is not “sick”. I am not the mother of a sick daughter and we are not a family with a special needs or medically fragile child. Yes, we park in handicapped spots because Emerson’s bones are brittle and her muscles are weak and yes, we occasionally pull out the wheel chair when there’s a lot of walking to do. That’s about where it ends though. It’s not who we are and it doesn’t define us anymore.

I don’t know what God has planned for Emerson, but I have some idea of what he had planned for us when he put her into our lives. She has opened our hearts and our minds and forced us to think beyond ourselves… her spirit and determination have shown us that anything is possible… and the love and prayers from so many has taught us that the human spirit is generous and good – a valuable lesson in the world we live in today.

Happy Birthday Emerson! Mommy loves you forever and ever. Never stop being exactly who you are – stubborn, demanding, oh so sassy and sweet. It’s caused me more than a few grey hairs, but it’s a powerful combination that has gotten you to this day. I can’t wait to see where it takes you next!

(I’m having some computer issues at the moment, but promise to post new pictures as soon as things are resolved!)

Its Sunday – our hopeful day for discharge. Bags are packed and home TPN shipment has arrived. Emerson didn’t have a particularly stellar night, though, & labs this morning were marginal. There was much discussion at rounds & the surgeon, after silent thought, said today isn’t the day. Eme should stay…

I picked my hopes up off the floor & sighed. Indeed it feels like we’re rushing her through this one. It is Christmas time, & while our hearts know the season, her little body does not.

Upon further discussion, though, we decided to go – while it is true that Emerson isn’t where we’d like her to be, the likelihood of things looking much different tomorrow morning is slim. Two weeks is an incredibly short admission for her; she typically stays 2 months. She probably needs another week or two, and if it weren’t Christmas, we would probably stay. We talked through different scenarios, though, and the surgeon ultimately said she trusts my instincts and my ability to care for Emerson at home – worst case scenario, we’ll come back.

In all, & has become the standard for discharge lately, Emerson is “good enough” (sort of). So for today… we are headed h*o*m*e. Bradley is with us & we’ll pick up Collin from the airport on our way. At about 9:30pm this evening MST, we should all be together. There’s no place like home for the holidays!

Thank you for your kind words, thoughts, and prayers.

Merry Christmas & God Bless.

In ‘there’s no way, that can’t be’ news – Emerson has been complaining of persistent pain in her left ankle & the team ordered an x-ray. On top of multiple compression fractures in her spine, she also has multiple fractures in her heel and ankle. She received a custom back brace for her spine today & ortho consulted on her foot/ankle – for now they ordered her a boot and tomorrow we’ll discuss if it needs to be casted.

I’m still hoping to discharge this weekend or early next week… but will be taking home a very broken little girl 😦

Operation “Home for Christmas”: Update

It’s been a fairly quiet week with slow, steady progress towards our goal. We hit a snag on our med wean yesterday & are in a holding pattern now, but I have confidence that we’ll soon be moving in the right direction again. Slow & steady wins the race with Eme!

The biggest event of the week came a bit unexpectedly today… In trying to formulate a plan to address on-going pain, I asked the team to order x-ray images of Eme’s spine. She’s been complaining of back pain for a while & was limping a bit with PT yesterday. My suspicion for anything obvious was low, but I felt it was best to ‘rule it out’ while we’re here.

Well, much to my surprise (& everyone else’s too I think) the x-ray showed 2 compression fractures in Emerson’s spine – L3 & L4. Wow. I’ve been passing off her pain as largely behavioral & I feel terrible about that. She has an incredibly high pain tolerance and has probably been in real pain for a while. Sigh…

Everyone responded swiftly today. We had consults from the pain (acute & chronic) team and surgery & a call to Palliative and ortho. They added another long-term medication to address the pain (on top of ones they already added this week) and she will be fitted for a custom brace tomorrow. The x-ray also showed significant demineralization of her spine & all suspect it, and the fractures, are a likely result of her chronic osteoporosis.

Along with the pain, this is bringing Emerson a lot of anxiety & the team is addressing that as well. In all, we’ll be going home with many new meds to add to her already very long list. Her temperament this admission has been mediocre at best. The new meds helped her take a nice, peaceful nap this afternoon, though, & for that I am so thankful.

We’re still hoping to be set free this weekend, but this new development adds some complexity to the admission. Everyone is working hard to get her what she needs quickly, though, so we can go home :).

Bradley is joining us Friday evening & we’ll rent a car and drive back all together just as soon as we can. I have some holiday things planned for us here in Omaha & am very much looking forward to his company! It will be a nice distraction from long, repetitive days in the PICU.

In other news, I’ve been doing a lot of online holiday shopping to pass the time & am afraid the kids will be overloaded with Christmas joy this year – lucky them! And if I get to watch them open it all, no matter where we physically are (home hopefully, but anywhere we are all together will do)… lucky me!

Thanks for checking in!

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Operation “Home for Christmas”

Happy Holidays! I’ve been quiet for a while, I know… life has gotten the better of me & “free-time” is hard to come by these days. I’m not complaining, though, & am thankful for the craziness in our lives. With the boys growing up so quickly, things will slow down soon enough. And when that time comes, I know how badly I’ll want these days back. “Savor & enjoy the crazy” – that’s my motto at the moment!

The Disney cruise was fun & all our medical supply issues were resolved – no problems there. Thanks, again, to all who helped with that! Emerson was a bit overwhelmed by the number of children on the ship & we sailed through a hurricane (missed our last port-of-call to avoid the eye of hurricane Joaquin). We made the best of it though. And if you can believe it, I haven’t had time to look through the pictures yet – haven’t even taken them off my memory card. Ugh. “Savoring & enjoying the crazy!!”

Sadly, I have a few minutes to post today, which reliably means one thing – Eme’s back in the hospital. ‘Tis the season. She spiked a high fever with vomiting & rigors Monday night. I took her to Denver Children’s Hospital where they stabilized her, started antibiotics &, within hours, had us on a life flight to Omaha. We’ve been in the PICU all week – Emerson’s infection is under control & we’re left, now, dealing with the fall-out from it all. We are sitting in a very familiar place, literally & figuratively speaking, today.

In encouraging news, this admission has gone much smoother than past ones. I’ve done very little advocating and very little stressing – everyone involved reacted swiftly this time. They know Emerson well & are coming to learn what she needs. They may not understand “why” she needs it, but they know what works. And instead of waiting for her to crash then put her back together, they worked hard to prevent the crash this time. All in all, I suspect it will save us many weeks on this admission & am hoping it means we’ll be home for Christmas.

In other news, Transplant called in the Palliative Care team today. They assure me they’re not “giving up” & will not ask me to sign a DNR or similar paperwork. They believe, though, that some on-going issues are best dealt with from a quality of life perspective now. Most doctors are uncomfortable prescribing the doses of medications that Eme requires &, already, we are doing things unheard of in the outpatient world. Transplant is not quick to refer patients to Palliative Care & says they’ve only called them a few times and never for a child as young as Emerson. I know many people have had wonderful experiences with Palliative Care teams – this transplant team, though, is in the business of putting people back together, at any expense & against all odds. They are not in the business of admitting that they cannot. Children in this program die while trying to be saved. All may not agree with this approach, but it is one I needed for a long time (& still do to some extent). Transplant was a bit concerned with how I would take the suggestion, but I agree – it’s time (probably long over-due actually).

In all, I will say that I have great respect for this transplant team. Eight years ago we boarded a medical flight to Omaha for transplant evaluation – a dark haired, fair skinned little girl with big eyes and a big personality and an innocent, naïve mom who knew nothing about this world and desperately needed to hear 4 little words, “we can save her”. We didn’t pick this team. We were told to go. They accepted Emerson into their program and listed her for transplant, but they didn’t really pick us. We were sent to them. Little could either of us have known the long road that lie ahead. So many times this relationship “should” have ended. So many times it did not. And through it all they’ve been stuck with me – an over-involved mother who refuses to give up & expects much from this team, and Emerson – a complicated patient who defies all medical odds and understanding most of the time. Indeed, the cruxes of our admissions lately have had little to do with Eme’s transplanted organs. She holds many “onlys” & “firsts” around here, but still they continue to accept her back time after time & they continue to work through her issues, organ related or not. And they continue do so long after many others have stopped. It’s not always easy for me. And I’m certain it’s not always easy for them either. We’re in this together, though, & together we’ve accomplished much! 🙂

I hope this post finds you doing well & enjoying the sights and sounds of this magical season! I visited the gift shop yesterday & picked up a few decorations. There’s no snow here in Omaha & this little room is dark and sterile – if not for a few reminders, it would be easy to forget that Christmas is only 2 weeks away. Collin has finals next week, and then travels to Boston for hockey. Bradley is busy finishing his semester and dreaming about his next snowboard flip. Jim is busy at work, and Eme & I are here. Christmas lists have been checked off & shopping is well under way… Meanwhile, I’m wishing for only one thing this year – that we’ll all be together again soon. Hardships have a way of cutting through the commercial chaos of the season and reminding us of what our heart really desires. Indeed my list this year is short.

I’ll keep you updated on Operation “Home for Christmas”!

A Royal Celebration!

9 years ago today this crazy journey began. I remember the details of it vividly – some days it feels like yesterday… other days it feels like a lifetime ago. And while I remember that day well, somehow all the many days in between have faded into distant memory & become a blur. Funny how the mind works, it conveniently ‘forgets’ to protect us. My mind is doing exactly what my soul (& sanity) needs! Two things I will never forget, though, are the two young children whose lives were cut far too short & the two strong and courageous families who, in their most difficult hours, chose to give another hope. It is because of them that Emerson woke this morning to celebrate another birthday. It is because of them that our family is whole.

We have many exciting things planned for what is becoming a lengthy & royal birthday celebration! It kicks off today with a Frozen party at home – just the family, but complete with lots of decorations, presents, dinner of choice, & cake. Then Collin (who is a high school junior, playing ice hockey & boarding full-time at a school about an hour south of us) & his roommate are coming tomorrow for a second round of presents & cake. Grandma comes next week for another birthday celebration. And it all culminates with the grand finale – a (girl’s only) Disney cruise! Eme, my mom & I are flying to Orlando the week after next, spending a day at Epcot, then boarding the Disney Fantasy for a fun-filled week in the Caribbean… exactly 2 weeks from today. The trip will include yet another birthday celebration, a princess tea party, & much more – a royal party indeed!

Happy 9th Birthday sweet princess. Many never thought this day would come, but deep inside I always knew. You are the strongest little girl & your spirit outshines us all. I pray the year ahead will bring much laughter, few tears, more good days, & less pain. May your friends always see through to your beautiful heart & may your puppy behave so she can spend more time inside with you! Most of all, may you always know that you are loved. And that I will be with you forever, no matter what tomorrow brings. Pinky promise… forever and ever…

I promise to share pictures soon. For now, though, we’re in pjs with messy bed hair & hopping in the shower to get this party started!

Home

It’s been a long & difficult admission (as they all are these days) and it hit last weekend like a ton of bricks. I woke up Saturday feeling a little “off” & by Sunday was barely able to get out of bed. Ugh! Emerson’s NP checked me over on Monday & prescribed an antibiotic, along with high-dose ibuprofen to reduce swelling in my throat… 48 hours later & I’m feeling much better. Not great, but much better. Thank goodness! There are few things harder than living in a hospital with your sick child. Living in a hospital with your sick child when you’re also sick, though, makes the short list.

Emerson’s run of good potassium levels post surgery has run out, sadly. Her levels have been low (again) for several mornings now & she’s been requiring a bolus everyday. The team has slowly been increasing potassium in her IV fluids, without much improvement overall. We have a very good standing history with Emerson, though, & we have a pretty good idea what her body will (& will not) do. In all, she’s not where we’d hoped to be at discharge… but that’s what we’re doing today – boarding a plane home to Colorado. It’s time to go home.

The team will increase potassium again this evening & we’ll get labs from home tomorrow morning. We’ll be back sometime this fall. For now, though, we’re going home 🙂

Again ?

Kind of a lot to wrap my head around, but the surgeon on service this week wants to remove Emerson’s other native kidney. It’s frustrating – I wanted both removed at the same time, but was told it was unsafe last week. A combination of differing opinions, though, has gotten us here – one kidney gone & facing another surgery to (potentially) do it again. Ugh!! It’s been a very rough recovery, I just can’t imagine…

After a brief discussion about timing, it was agreed that Emerson would go home first to completely recover from this surgery & then return to do it again. My greatest hope now is that the improvement we see from this surgery will be “good enough” and we won’t have to. It’s such a fine line knowing how far to go, though – it will never be perfect… how good is “good enough”?
I suppose time will tell.

Again, this week, I am reminded to breathe and let go. There was a reason for this, there has to be – a reason why Emerson may have to endure this again & a reason why we will go home facing another lengthy admission, apart from family, to do it all again. We never know the outcome of the path untaken in life & I have to believe this was the best path for Emerson. I don’t understand it, but I choose to have faith.

In all, it’s a constant battle between being cautious & “safe” and being practical & realistic. Yes, Emerson’s safety is important (obviously)… but we also can’t live in a hospital 600 miles from home while doctors very slowly & methodically work through all her problems. It’s a difficult balance to strike & a hard message to convey. Sometimes, though, I think we need to be reasonably aggressive with the intent to shorten hospital stays & maximize time at home. And while everyone is wonderfully thoughtful and caring with Emerson, I’m afraid some lose sight of the “bigger picture” – that Emerson does not function independently, but rather that she is part of a greater whole. Again, there are no easy answers. It is a very difficult situation all around.

For today, Emerson continues to have pain & they increased doses and added more meds to address it this morning. In addition to “real” pain, though, she’s also now developing “behavioral” pain – it’s sometimes difficult to separate the two & always difficult to manage. Emerson has been very agitated with lots of yelling & screaming today – my head is pounding.

Otherwise, things look pretty good. She’s transferring out of the PICU today or tomorrow and I’m hopeful that different distractions, along with the freedom to move around more, will help with the pain situation. I’ve asked everyone to aim for discharge in 2 weeks & am hopeful that wherever she is then will be “good enough” for now. I’ve missed the entire summer at home with the boys & really want to be home when school starts – both are transitioning this year and I want to be there to help.

It never gets any easier, that’s for sure… & as I sit in my little red recliner, at the side of my daughter’s PICU bed, for hours on end (going on 5 straight weeks now)… I cycle through all the potential scenarios for her & our family… and none of them are all that great, honestly. So I’m left, again, resting on my faith – believing there really is some greater reason for all this, something much bigger than her or me, & hoping that things will continue to improve so we can go home soon. And praying – praying that some day this will all make sense.