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Wheeee.....

Yep, I'm still in my jammies (a hospital gown)... having fun though J

I found myself sitting on the deck Sunday morning… a coffee in one hand, Bella on my lap, Bandit at my feet.  The sun glistened over Pikes Peak in the distance while my 3 children played on the slide in our yard – Collin at the top with Emerson, Bradley at the bottom with his arms stretched towards her.  Giggles and grins abound.  Jim, high on a ladder with a paint brush in one hand & a bucket of stain in the other, was giving our tired, sun soaked play set a little face-lift.  I sat peacefully & watched it all… what a beautiful site.  I can honestly say THESE are the best days of my life – this past weekend, today.  THIS is it.  I’ve gained a few pounds over the past several years… many grey hairs & more than a few wrinkles, but they’ve been well earned.  I may not look the same as I did when this all started, not as young and certainly not as beautiful… but my spirit has never been better… my love and appreciation for life has never been stronger.  Don’t get me wrong – there are no fairies fluttering through our garden.  Two minutes later the boys were fighting – “push her NOW”, “let’s swing”, “come ooooonnnnnn”, “STOOOPPPP”… if you have children, you know the drill.  Nope life isn’t perfect, but it’s LIFE & I am loving every minute of it!

I don’t know how much longer we have with Emerson… I fear that should something happen to her the joy I felt this weekend will be lost to us forever.  I am continually reminded how quickly things can change in the transplant world – in a split second, when you’re least expecting it.  I know that ‘healthy’ today means only that – ‘healthy’ TODAY.  Indeed I don’t know what tomorrow will bring.  None of us do.  Will Emerson outlive me?  Will this last forever?  Probably not.  I’m not thinking about that today, though.  For today I’m only thinking about TODAY.

As I was driving to the grocery store Sunday afternoon a song came across the radio:

“I have been blessed. And I feel like I’ve found my way. I thank God for all I’ve been given at the end of every day. I have been blessed. With so much more than I deserve. To be here with the ones that love me. To love them so much it hurts. I have been blessed”

~ Blessed by Martina McBride

I couldn’t have said it better myself!  Indeed, I have been blessedJ.

Emerson had an appointment at Denver Children’s Hospital yesterday & we meet with the local pediatrician this afternoon.  In great news, she came home last night!!  It may have been the first time Eme’s ever been to TCH & avoided an admission!  At the end of the appointment the doctor said he was going to be very bold & schedule her next appointment out 3… months I said?!?!??  Are you crazy, he replied?  Nope… 3 weeks!  Wishful thinkingJ!  If she can actually make it 3 weeks, though, it would be a first!!  They’re referring her to the rehab clinic to address recent problems with her feet & ankles.  She was up several times last night crying in pain.  I have meetings scheduled with the local elementary school next week & if all goes as planned, Emerson will start pre-K Monday, September 13th.  WOW… hard to believe! 

Check back later for more updates from all the appointments this week…

School supplies… check, annual physicals… check, closed toe shoes… check, mounds of paperwork… completed & signed.  The first day of school has arrived – 3 days to prepare & little sleep to be had, but (drum roll please)… I drove the boys to school this morning, helped Bradley get situated in his new classroom, met the new chef, talked to the school nurse, dropped off forms & checks, visited with a few parents… I DID IT!!  Mission Accomplished!!  I made it home for the first day of school – Collin’s first day of middle school & Bradley’s first day at a new school.  WOO HOOJ!

I paid a small price – only 3 ½ hours of sleep last night – but it was worth every penny!!  I was thrilled to share this important day with both the boys.  There was lots of nervous energy in the car this morning… I can’t wait to hear the stories this afternoon!! 

And speaking of stories… you might be interested to hear all the things I’ve learned this week – a 10 pound mass of hair was removed from a woman’s stomach (yep), tequila poured onto stainless steel can form small diamonds, & scientists look for clumps of penguin poop from space to determine their breeding patterns – who knew?!?  Never a dull moment around here!

Emerson is doing pretty well, although she doesn’t want to walk much anymore.  Her feet (left one in particular) are turning in more than I’ve ever seen & her ankles are weak.  She had x-rays of both ankles last week which showed no acute injury, but multiple arrest lines on the lower portion of the main bones in each leg.  It basically looked like 5 or 6 deep fractures through each bone.  They can be caused by extreme illness &/or osteopenia – Emerson had/has both.  The team didn’t think this finding explains her current reluctance to walk, though.  She’s also complaining of a lot of pain & can only wear her braces an hour or so at a time.  Two months ago she was walking everywhere & wearing her braces all day.  I’m not sure what to make of it, but have requested an appointment with an ortho doc.  It may be disease progression, but I’m certainly hoping that’s not so.  In any case, we’re ordering a medical stroller for now.  She walks a little with her baby stroller for support, but mostly wants me to carry her.  I’ve already hurt my wrist & am breaking my back!  She’s not so little anymore!!

Emerson is thoroughly enjoying life with “Kai”, “Beet”, & “Lello” (aka Collin, Bradley & Bella, her white little Bichon).  She put “Lello” in her baby carriage this morning & took her for a little stroll – too cuteJ.  Bella stayed put the whole time… she loves all the attention!  Of course my camera was nowhere to be found.  I promise to grab it next time... I owe you all some new pics!

Eme has appointments at Denver Children’s Hospital & at the local pediatrician’s office next week – she, believe it or not, has never even met Emerson!  Collin has hockey try-outs.  There are parent nights at school for both boys – Tuesday for Collin, Wednesday for Bradley. I’m trying to find my way into a schedule, & it’s proving to be a challenge.  I’m anxious to get some home nursing support & hope that will help.  Life with three kids is hectic alone; add to that Eme’s cares & it’s a bit overwhelming!

Ha… you might appreciate this – I just spent 20+ minutes composing a “reply” on the guestbook & the server recognized my email address as SPAM.  Hmmmmmm… & I am the administratorJ!  Anyhow, I lost my words, so before I lose my thoughts too I’ll post them here.

I wanted to take a minute & reply quickly to some chatter here on the guestbook regarding Ashley Kate.  To anyone who may not know it, Emerson herself transplanted twice & Emerson herself faced near certain death on several occasions.  As a matter of fact at time of ex-plant Emerson was actually much sicker than Ashley was.  She was in end-stage liver, kidney, & respiratory failure.  She was on 24-hour dialysis and had been paralyzed and on the vent over 2 months following an 8 minute code she was not expected to survive.  I am in no way attempting to ‘compare’ our situations, but say this simply to let you know I’ve walked in Trish’s shoes.  I will never pretend to know exactly what she needs or how she is feeling, but I believe I understand as well as anyone possibly could.  Having said that, the reason for my words – “she cannot survive without a bowel” – was only to emphasize the severity of the situation.  In pictures posted around that time Ashley looked ‘pretty good’, but looks can be incredibly deceiving. 

Indeed it is critically important to have hope in times like this.  I am in regular contact with Ashley’s mom & in every conversation we have I express it.  I honestly believe Ashley can & will do this and have shared that with Trish many times.  As a matter of fact, in the same paragraph referenced above I said Emerson’s spirit is strong & that pulled her through.  I said Ashley’s spirit, too, is very strong & I believe it will do the same for her.  There is hope.  Of course there is.  I apologize if my words led you to think I believed differently.

In the end, Ashley is very sick.  The situation is serious & continues to intensify.  She desperately needs a break.  I, however, believe she can fight back from this.  I believe Ashley can do it… not because Emerson did, but because she is a strong little girl with a vibrant spirit… because her mommy & daddy would move mountains for her… because her brother’s & sister’s worlds revolve around her … because she is so loved & she knows it.  That is very powerful!  If you want to follow along on their journey &/or leave words of encouragement for Ashley and her family, here is the web address again:

http://ashleyadamsjournal.blogspot.com

No offense taken, I just wanted to clarify the intention of my words.

Beyond all that, let’s please stop the chatter regarding this & use our energy to blanket Ashley and her family in prayer instead.  I know words can be misunderstood, but I choose to believe anyone following our journey does so with good intent and a loving heart.  Please remember that…

Thanks, as always, for ALL your continuing support!

Erika

Sorry… things have just been crazy!!  Last week was very hectic trying to squeeze in visits with all our transplant friends, nurses, & others before heading home.  Emerson hit a few little bumps, but nothing majorJ.  We arrived in Colorado last night around 5pm.  We’re HOME!!  I have lots more to share, but am off to do some school supply shopping at the moment.  School starts Thursday & we’re busy, busy until then!  Check back in a few days!!

So sorry you haven't heard from me in a few days... my computer got a nasty virus last week & I had to take it in.  $115 & a full week with NO computer!  Yikes!!  I broke down this morning & bought a little netbook - I simply can't function without internet access.  All my interaction with the outside world happens thanks to a little thing called the internet.  I didn't know how much I relied on it until it disappeared!  So... bad news - I've blown my budget for the next several months, good news - I'm back online.

Emerson was discharged Friday night.  We checked into a hotel downtown & thoroughly enjoyed our weekend spent OUTSIDE the hospital!  It's been super hot here ("feels like" temps over 110 deg), so Eme's demands to "walk wide" took place at Target.  We spent most of the day there yesterday!  

Her stoma is draining urine, but is still very tender & sore.  I'm a little concerned but would guess it'll get better with time.  She's pretty weak from another 3+ month admission & although her stubborn self wants to "walk wide" everywhere, she asks to be picked "up" after 20 or so steps.  I'm both building muscles & breaking my back as a result... she's huge!

We were at the hospital for labs this morning & have a clinic appointment there Thursday.  If all goes well we'll be on the road back to Colorado Saturday morning... just in time for the start of school.  A lot can happen in a week, though, so I'm taking it one day at a time.  For today Eme remains outpatient & is doing well, all things considered :)!

I’m not really sure how to interpret everything at this time.  Emerson’s foley catheter has been removed.  The site around her vesicostomy is still very sore & swollen (although improving) and the hole is definitely open.  It is not, however, always draining.  As a matter of fact it didn’t drain at all last night.  I set my alarm to sound every 2 ½ - 3 hours through the night & woke to cath her through the new hole.  Urine drained that way, but it did not drain on it’s own.  I was nearly ready to call it a loss (& pull all my hair out) this morning. 

After a discussion with the team, though, they seem to be okay with the workings of Eme’s new stoma.  It’s positional (rather obviously).  When she’s lying on her back, which is how she always sleeps, urine won’t drain from the hole until her bladder is pretty full.  When she’s up & moving urine should drain much better.

Unlike before, I was told we’re no longer concerned about sitting urine in her bladder.  Before surgery sitting urine would build up pressure in her bladder.  That pressure would push the urine back through her ureters and into her kidneys.  Infected/colonized urine backing up into her kidneys was damaging & ultimately would have destroyed her kidneys.  Now there’s a hole in her bladder, though, & pressure cannot build up.  It doesn’t matter how much urine is sitting there anymore, all pressure will be released through the hole… draining or not.  Imagine a balloon – you can’t blow up a balloon that has a hole in it.

All this should keep the infections out of Emerson’s kidneys… that’s good.  How will it help to control the infections in her bladder though?  Sitting urine in her bladder will cause a UTI, and it will probably be this deadly klebsiella.  Do we use up the one remaining antibiotic treating UTIs?  Or do we choose to not treat them?  And is that even an option??  All really good questions, Dr. L said this morning.  In a nutshell he has no idea.  We’ll have to see how the first one presents & make a decision at that time.  Indeed, he said, she will continue to have UTIs.  Arrgghh!!!

Additionally, I’ve asked a lot of questions about what she can & can’t do now.  Answer – baths, okay… pools, okay… lakes & oceans, nope.  I’m working with a wound/ostomy nurse to try and find a pouching solution for this stoma so the urine will drain into a bag & not into a diaper.  It may or may not work.  The site is still too swollen to know for sure what the stoma is ultimately going to look like.

As suspected there’ll be no quick decision to abandon this approach.  Depending on how often & how involved her UTIs are, it may still be deemed necessary to remove her bladder completely.  For now, though, we’re going home & working with this for a few months.  We’ll just have to see how it goes.  There’s not much they’re doing for us here now.  Her foley has been removed & they’ll remove her central line tomorrow.  What we face now is trial & error until we can figure out how to live with this.  So, the plan is to discharge to the local area tomorrow.  We’ll stay in Omaha for at least one full week to make sure things continue to work properly.  After that we’re headed home!

I’ve made the decision to stay off campus this coming week.  As you know, we always stay at the Lied Center here in the hospital.  Tomorrow, though, we’re checking into an all suites hotel in downtown Omaha.  I’m really looking forward to a week with Eme all to myself.  We’ve been together for so long, but all our interactions have taken place in a hospital.  I’m really looking forward to some time with her out of this place.  I plan to get her hair cut one day, walk around the park another, & take a horse drawn carriage ride through the streets of the Old Market one night.  A little quality mother daughter time before we re-join the craziesJ!

Emerson was awake & screaming from 2 - 3AM because….. I turned off Elmo.  Yep, Elmo.  She threw in a few “ouchies”, but I’m pretty sure it had more to do with the departure of her red, furry friend than it did any great amount of pain!  I thought she was asleep, but apparently one ear was awake & listening.  All that, unfortunately, put me in a tough spot – for one, 2AM is clearly past Elmo’s (& Eme’s) bedtime & for two, once she started screaming I definitely could not turn him back on.  I’m trying hard to teach her that screaming will NOT get her what she wants.  So yes, it was a rough night – for meJ!!

Emerson started sitting up yesterday & while she continues on scheduled pain meds through her feeding tube, she required fewer doses of IV medication for break through pain.  That’s a step in the right direction!  Today she’s sitting in a chair & playing with her doll house… her most favorite toy ever!  The swelling around her new vesicostomy is decreasing, although I still can’t actually see the stoma.  The NP passed a q-tip through the hole this morning & said she met no resistance.  That’s encouraging!

The surgeon on this week is a bit more aggressive than the others & wanted to pull her foley catheter today.  I think she needs one more day, so we agreed to pull it tomorrow & “see what happens”.  We’re all, obviously, hoping the new site will drain.  For now it is not.  Once we remove the foley, though, there’ll be no where else for her urine to go… hopefully this works!  I expressed my concerns to Dr. L & he said, indeed, it may not.  It “should”, but will it?  Only time will tell.  He reaffirmed this surgery was only possible because Emerson’s bladder is so “huge” due to her underlying disease process.  This surgery is not often, if ever, done this way simply because it cannot be.  If it works it spared Eme an even more invasive procedure.  If not?... don’t get me started.

The team has decided to continue Emerson’s IV antibiotics until all the plastic can be pulled from her body – bladder & blood.  Phew… I think she actually has a shot of staying infection free this time.  Wouldn’t that be something?!?!?!  I’m thinking we pull the catheter tomorrow, the vesicostomy starts draining (fingers crossed), she discharges this weekend, we stay in Omaha for 1 week to make sure everything continues to work properly, AND… we’re home for the start of the school year!!  WOW!!  Could it be???  Stay tuned…

Emerson has yet to move this weekend… at all.  She lies flat on her back & that seems to be the only position that brings her any relief.  We’ve scaled back on her pain meds, switching to an oral form (pushed through her feeding tube).  She still requires IV morphine, though, before all cares.  She complains of pain when she’s awake, but has been sleeping most of the day.  Her groin/lower stomach area is very swollen & for now there is no stoma to be seen.  The incision looks clean, but continues to ooze blood.  Nurses are changing the dressing often to keep it dry.  There is no urine draining from the new stoma yet – I assume the hole will open up as the swelling decreases.  For now all her urine is draining through a foley catheter placed through her urethra.  After surgery Dr. M said it would be 4-5 days before we start using the new vesicostomy site.  Today he said 2 weeks.  Eme is immune suppressed & her little body is tired – the combination of the two is slowing down her recovery.  I sure hope that’s all it is. 

Tomorrow starts a new week with a new surgeon.  There’ll be lots to talk about as her antibiotic treatment has come to an end, but she still has plastic indwelling both in her blood & her bladder.  The choices we make now are huge.  If this infection comes back it could be the end… at best it will be ugly.  This is where my nerves kick in.  I’m scared, there’s no other way to describe it.  I hope we can come to a unanimous decision on how to proceed from here.

There’s so much more I could say, but I try to hold my tongue as much as possible.  I’m frustrated that the hole we’ve been dilating for 3 months was just closed – the process of dilating that hole cost Emerson 2 rounds of sepsis & several UTIs.  It is due to those infections that this bug has grown even stronger.  It is because of those infections that we now sit in such a critical position with this organism.  It’s no one’s fault.  The site couldn’t be used.  I’m just starting to feel like my daughter is a lab rat around here.  They poke & prod & cut… just to “see what happens”.  I would really like this to STOP.  If they want to know what’s going to happen, try it on a pig & we’ll talk about it if it works.  Not that I promote animal cruelty, but you know what I mean.  Let’s not try it for the first time on my daughter! 

And to make things even worse, I came upon a resident today who wanted to stop/change around Eme’s meds (on a Sunday of all things).  It was the most heated discussion I’ve had with a doctor in a long time, if ever.  He, among other things, insinuated that we have made Emerson sick by putting her on too many medications (I'd love to see him try that theory out on Dr. L, the chief transplant surgeon & director of this program).  He even suggested we should leave Eme’s central line in until it becomes infected (with the strength of this bug, I kinda thought it’d be best to remove the line before it becomes infected!!).  It’s absolutely absurd.  He reads a lot of medical books, that was evident, but he doesn’t know anything about my daughter.  I could go on & on, but I won’t.  Luckily there’s no way the decision makers here would change any of Eme’s med.  They’ve been treating her for over 2 years now & they know what she needs. 

I’m just tired… tired of fighting… tired of listening to my baby cry “ouchy”… tired of this infection… tired of the fear.  My head hurts.  I’ve had a headache all weekend & it won’t go away.  I really hope things come easier next week…

Do you ever wonder if these children will grow tired & simply stop fighting?  I wonder that this morning… actually, I’ve been wondering it a lot lately.  Emerson has survived because of her will to live.  There’s no other way to explain it.  Even in the darkest hour, when hope was hard to find, I heard, “her spirit is strong… hold on to that.”  What happens when her spirit fades?  Surely she’ll get tired, right?  I’m already exhausted watching her fight for so long.  I KNOW I couldn’t do it.  She’s allowed, right?  She’s allowed to be tired…  What happens then?

Don’t misunderstand me, Emerson is okay.  She continued to battle with some pain issues last evening, but rested comfortably through the night.  We’re staying on top of her meds today & she’s been sleeping most of the morning.  She stirs for cares then drifts right back to sleep.  I’m so thankful she’s able to find some rest.  Her blood pressures are a little soft, but otherwise her vitals remain strong.

The foley catheter is draining & the dressing around her new vesicostomy is mostly dry – that’s good.  I misunderstood yesterday, but the wound actually has been closed.  The stoma, though, was created in the center of the incision so it will be some time before we’re able to pouch it.  I have no idea what we’ll do in the mean time – I’m not sure anyone really does.  It feels like we’re more or less taking this one day/one step at a time right now.  This is something the transplant team here has never done before.

Yes, Emerson is okay this morning.  I just honestly don’t know how much longer she can keep it up & it makes me sad… my heart is heavy today.

Little Ashley survived ex-plant last night & is resting much more peacefully today.  Unfortunately now she is left without a bowel.  You cannot survive without a bowel.  She won’t die today, but she can’t live long like this.  The family is heartbroken but clinging to hope for a miracle.  That miracle would come in the form of a transfer to home, 6 months infection free on TPN, & approval to re-transplant.  Any way you look at it they are faced with difficult days ahead & sweet Ashley is gearing up for the fight of her life.  Literally.  Her spirit too, though, is strong.  Very strong.  God bless these precious little girls.