2010 Fundraisers

Current admission?  3 months (minus 2 short days) & counting.  Number of 30 day periods spent out-patient since January 2008 (2 1/2 years)?  ONE!

I CAN’T do this… I can’t DO this… I can’t do THIS… I CAN’T DO this… I CAN’T DO THIS ANYMORE!!  How else do I say it?  Are there other words that would make it clearer??  How do I get this team to hear me??

That’s how I prepared to start my conversation with Dr. M this morning, but then it dawned on me… what’s the point?  What does it really mean?  No one is keeping us here against our will.  I brought Emerson here to be treated because I believe they are the best at what they do.  2 1/2 years ago I asked them to save my daughter's life.  They did that.  They are not God… they cannot “cure” her.  Emerson is sick.  She was born this way.  They are not making her sicker, they are trying to help.  They don’t want her here anymore than I do.  Indeed this is the dark side of transplant.  And unfortunately, this is Emerson’s course.  So, now I’ve decided to take another approach…

Dr. M came in & I shot straight to the bottom line… this is what I want & why.  No more vague statements implying the difficulty of all this, rather a firm plan about what I’m willing to accept as far as treatment goes.  “I can’t do this anymore”… okay, that’s been well established but what are we going to do about it?

Here, in a nutshell, is the problem (understanding the basic principal of it all – anywhere there is plastic in the body there is a breeding ground for serious infection):

Emerson’s antibiotics finish Friday.  If we follow the plan of catheter dilation it’ll be 3-4 weeks until the next dilation &/or final surgery & she’ll sit for the next 3-4 weeks with a central line & a plastic bladder catheter in place.  That, my friends, is a massive recipe for disaster.  I think about it & visions of the code run rampant through my head.  She harbors a highly antibiotic resistant, life-threatening organism.  You put plastic in her body, stop the antibiotics, & boom – you’re asking for it.  Unfortunately, the next “it” could really be IT.

Do you pull the central line & place another one before the next surgery?  Then you’re looking at a likely UTI from the plastic in her bladder, but may avoid another dreaded round of sepsis.  At the rate at which we’re placing & pulling central lines, though, Emerson’s next life-threatening condition will be the loss of central line access.  She’s already lost all peripheral access.  To lose all central access too would be catastrophic at this point.  We’re between a rock & a hard place right now.  There are no easy answers.  This organism has morphed again & we’re now officially OUT of treatment options - the price of poker has just gone up (Dr. M chuckled at that commentJ, but it’s true).

To make things even worse, the whole process of dilating this hole & turning it into a permanent stoma for urine drainage has never been done here before.  They don’t even know if it will ultimately work.  The possibility of us getting “stuck” here for many, many more months is becoming a near certainty.

So… what do we do?  We end this.  That’s what we do.  We find some way to complete this process NOW (rather than 3-4 weeks from now - you might be surprised to know how much can go seriously wrong in 3-4 short weeks), we pull the plastic from her body, & we send her tired little body home to Colorado and see what happens.  Maybe she can do it, maybe she can’t, but she doesn’t have a fighting chance the way things currently sit. 

To sum it all up, this is what I want: 

·         A permanent hole for urine drainage

·         All plastic OUT (bladder catheter & central line)

·         HOME

Now another option has been thrown into the mix – should we just remove Eme’s bladder all together?  She has a completely non-functional bladder that is (by all accounts) harboring a deadly infection.  Why are we trying to save it?  It will never work.  The only problem is it would entail a major surgery through her transplant scar.  Everyone wants to avoid that for obvious reasons, but again… the price of poker has just gone up.

In a surprising end to it all, Dr. M said “This may not happen often, but I agree with you 100%”!  So, Eme had her dilation surgery today.  Dr. M will review with all the other surgeons, eyeball the bladder catheter site tomorrow, & either

1) follow through with the original plan & perform the final surgery to create a bladder stoma either Friday or early next week, or

2) remove her bladder next week. 

Either way we’re looking at about 2-3 weeks of recovery & back to Colorado.

It’s time…

Oh, & for what it's worth - I think she can do it.  I really, really do!!

Sorry if I didn't explain it well, I've already had this question a few times:

If they remove Eme's bladder how would she pee?

They'd attach the ureters (the tubes between the kidneys & the bladder) to a piece of small bowel & bring it to the surface to create a stoma.  It would look just like her ileostomy, but it would drain urine.  This is done routinely with people who have bladder cancer.  All urine, then, would drain from her kidneys directly into a bag attached to the outside of her body.

We’re here!  We rolled into town about 9PM last night – a 12 hour drive.  We made it with minimal stops for coffee, gas, & meds.  Emerson was a champJ. 

It was soooo nice to arrive to a team of nurses who know us so well (& who try so hard to make us comfortable).  They really take care of both of us & I really appreciate that.

Lots to talk about today… I sure hope the team has a few extra minutes for me this morning.

We finally got everyone on the same page & we finally have a plan!  As much as I’d hoped (& pushed) otherwise, Detroit will not take Emerson to surgery to dilate her bladder catheter back upL.  It’s a simple procedure but, as I was reminded many times, nothing is simple with Eme anymore.  Detroit simply doesn’t want the risk of something going awry on their watch.  And for as much as I’d like to stay here through the end of antibiotic treatment (next Friday), we really need to get this bladder catheter resized so we can schedule the final surgery, get back to Colorado, & get on with our lives.  I said I needed to be home by the start of the school year (Aug 19th).  After this set-back with the catheter, though, I’m told early September.  I just can’t push it back any further than that.

So… Eme is scheduled for surgery in Omaha next Wednesday afternoon.  We’ll drive (private car, no life flightJ) back Tuesday.  She has an IV med that will run from 9-10AM & we’ll leave immediately after that.  It’s an 11 hour drive from here.  Cardiology has cleared her to come off monitors for the drive and infectious disease has approved the mode of transport as well.  In all she’ll miss 1 dose of IV antibiotic & will be late on 1 other.  Omaha will have a bed waiting for her upon our arrival…

I talked to the coordinator in Omaha today & very nicely laid out my plan for the next month - dilation surgery next week, final surgery 3 weeks later, 2 weeks in Omaha to make sure everything’s working properly, then home by September 1st.  She chuckled & said that sounds nice, but would assume Eme’s on board which, in the 2+years we’ve been in Omaha she never has been.  Her plans always seem to follow a different schedule than mine.  Indeed, Emerson is in charge & always has been on this journey!

A big shout-out to Mary & her nursing students from OU today… they’ve been with Emerson on and off this whole admission.  We’ve had a lot of nursing students & instructors over the years & I’ll tell you, these guys were really a pleasure to work with.  Mary was very involved and the students were responsible & respectful.  As the mom of a chronic kiddo I really appreciate that.  As I’ve said many times before, I struggle daily to make sense of all this.  The very least I can hope for is that people – students, nurses, doctors – will learn from Emerson & be better able to manage those who follow in her footsteps.  Hopefully Eme had an impact, however small, on these student nurses & hopefully they, as a result, have learned something from her! 

Emerson was in good spirits today, although it’s 10PM & she’s been sleeping since 2!  She woke up for 10 minutes screaming & has drifted back to sleep again.  I think she’s just exhausted from this admission, but I always get a little nervous when she does this – especially with a central line in.  Hopefully she’ll wake up alert & well rested tomorrow morning.

Finally, I had the opportunity to visit with my college roommate this week – it was awesome!!  I hadn’t seen her in years.  We talked for several hours & could have done so for days!!  This weekend I’m hoping to catch up with some more old friends (make that young old friendsJ).  For those who are wondering, yep – I grew up here!  I also plan to spend tomorrow at the lake.  It’ll be my last day with the family this summer.  How I hope & pray next year will bring us the chance to stay for much longer!

Have a fabulous weekend… I’ll update again soon!

To This!

Not too shabby for a “momeye” J

Thanks Zoe

I LOVE my new house!!!

Wow… could it be??  Did Santa really read the blog this week & find his way to room 681 last night??  By the looks of the boxes that arrived & the surprise on Eme’s face you certainly might think so.

But alas, it wasn’t Santa (I checked – he’s in the Caribbean resting up for a busy holiday season…).  Nope, it wasn’t Santa, it was a little angel named Zoe (& her mom Kathleen from Colorado Springs).  You would not believe what arrived from them this morning – a huge Playmobil house AND furniture for every room!!!! 

The furniture actually arrived yesterday & Emerson played with it ALL day long.  She quickly retired the vet clinic & was interested only in playing house.  She loved the people & spent the day arranging the family room, putting everyone to bed, waking them up, feeding them, putting them to bed again… Then this morning the house arrived & you should have seen the look on her face.  Oh My Gosh – I thought it might precipitate the cardiac arrest we’ve been watching for all weekJ.  The excitement on her face was priceless!

I opened the box to find a million little pieces to assemble, so I think I’ll leave it for Collin (he loves that kinda stuff).  That’s assuming, though, I can survive the day listening to “momeye me, momeye me, momeye me” (pointing to the box) ALL DAY LONG.  We’ll see how long I can hold out!

Looks like I’ll have to think of something new for Santa to work on.  A million thanks to little Zoe & her mom for brightening my little girl’s life this week!  Thanks, also, for delivering me some peace – Emerson played beautifully (& quietly) all day yesterday!

Of course many others have contributed to Emerson’s fund &/or sent gifts over the years.  A few select donations stick out in my mind… like the grandmother of Bradley’s classmate who sent a $1,500 check with her to the bowl-a-thon this year.  Wow!!  And of course the company (Medco) who adopted our family for Christmas & sent 15 huge boxes of wrapped gifts to all three of my beautiful children!  And the employees from Medco who continue to bless us through the years – from American Girl Store gift cards, to books, to ‘lellos’…  And of course to the countless others who’ve given $5, $10, $20 & who’ve sent cards, stickers, zhu zhu hamsters, videos… they’ve ALL added up to enrich our lives in ways you could never know.  Even the simplest little thing puts a smile on our faces & that, many days alone, is a gift beyond compare.  Thank You to each & every one of you.  We are so blessed!

Okay… now Eme’s yelling “momeye, bye bye dat (pointing to the computer), momeye dat (pointing to the house)”.  Looks like I’ve got a project on my hands!!  I’ll let you know how it goesJ.

Did I sound happy in that past post… wow – I must have written it before the day really began!  The truth is I’m going crazy here.  The doctor’s are great & yes, they’re making good decisions & yes, I’m very thankful for a second set of eyes.  But……..let’s just say I’ll never complain about the care Eme receives in Denver or Omaha ever again.  There are no words to explain how much it means to be amongst medical staff (nurses) who really know us.  They know Emerson – what she’s been through, what she likes & dislikes, what her screams mean, when to leave her alone.  They know me – what I like to be involved in, what drives me crazy, when to call, when to leave me alone.  As far as the nurses here are concerned we just walked in off the street.  Some don’t know what organs she had transplanted & most have no idea how long she’s spent in the hospital (hello - does she have a patient chart?!?).

They make her stay in her room with the door closed at all times.  They have no central monitoring of her heart leads or pumps, but can supposedly “hear” it all just fine.  Well… I’m telling you, pumps are beeping incessantly ALL day & ALL night long in here.  Just to prove a point (mostly to myself), I let one pump go today to see how long it would alarm before someone responded.  36 minutes later a student nurse walked in to take vitals – she shut it off.  The pump alarms 12 times per minute.  Multiply that by 36 minutes & in all it sounded 432 times.  No wonder I had a raging headache today!!

Don’t get me wrong, they’re all very nice here – our nurse tonight is super friendly.  They just don’t know us.  It’s not their fault; it just makes me appreciate everyone in Omaha & Denver even that much more!! 

Beyond that, Emerson is really, really ornery.  And I don’t mean kinda testy, I mean all out, full steam ahead ornery.  She’s throwing toys, pulling out her hair, screaming at me… she wants her video changed every 5 minutes, wants water, throws it on the floor, wants more water…  I was contemplating adoption today, but was pretty sure no one would want her!  I seriously think she needs something to help calm her down.  At this point, what’s one more med? (& I say that in all seriousness – it’s really not so funny or cute anymore).

Phew… how’s that for a change of mindset.  Keep with me & you never know what’s coming next!!  On a funny note, a while back I posted the following (after Eme’s 1st transplant):

“Bipolar disorder is an illness of severe mood swings. It is also called manic depression. If you have this illness, you may have periods of severe high or low moods.”

It’s official – I’m bipolarJ. 

I was joking, of course, but several people thought I was serious.  They very cautiously recommended I see someone & get on the appropriate meds.  Ha, ha… guess my mood does change rather often.  Up, down, up, down… it’s kind of the nature of this journey.  I try to stay positive, but in the end it just plain sucks!

Finally, and on a totally different note, I want to respond to some more questions I’ve been receiving.  I’ve thought long & hard about how to reply and even posted a response once, only to delete it 5 minutes later.  In the end, we’re in an impossible situation & there really is nothing I can say that would adequately explain why we do what we do.  Simply put, I can’t make you understand.  There’s no way you could, and that’s okay… really it is.  I don’t fault anyone for asking questions & I don’t fault anyone for not understanding – I totally get it.  There are only a select few people I know who can understand & they are my intestinal transplant friends from Omaha (or other out of state centers).  I wouldn’t wish this journey on my worst enemy & if living through it is the only way to ‘get it’ I’m glad none of you do.  And I mean that from the bottom of my heart.  I hope that makes sense. 

Please know Jim & I have thought through every possible situation in the entire universe… we talk about it ALL the time.  Can/should we cut ties with Omaha?  It’s so complicated… I suppose technically we could, but it’s certainly not in Emerson’s best interest.  The field of intestinal transplant is highly specialized & there are very few hospitals in the country that know anything about it.  After everything we’ve done to get Eme this far, we’re not about to start making sub-optimal treatment choices for her now.  It just doesn’t make any sense… we’re so close.  My heart, mind, and body have fought so long & so hard for this little girl, I don’t know how to stop fighting.  Will they always want her back?  The short answer to that is yes – anytime things get complicated &/or anytime our home hospital is uncomfortable managing her care.  Ideally Eme will stay in Denver for things like dehydration caused by viral illness, UTIs, etc.  She’ll almost always return, though, for rejection and/or any discussion regarding loss of graft (transplanted organ).  Unfortunately, Eme hasn’t had many minor complications yet – she likes to do things big.  We’re all hopeful, though, that things will start to calm down in the near future.  If they don’t you all know the anticipated outcome.

In the end, I always welcome your questions - you’re just trying to make sense of it all.  Trust me… I have just as many questions as you do.  It’s an almost unbelievable situation.  I often liken this blog to a reality internet series.  If you didn’t see it &/or read about it you’d never in a million years believe it’s actually happening.  I certainly never knew people lived in hospitals apart from their families for years on end.  I thought people went to the hospital, stayed a few weeks, then got better, transferred to a long-term care facility, or died.  I honestly never knew people lived in hospitals!  Indeed they do…  It’s just surreal, the whole darn thing! 

Another (long) chapter in the novel that is Emerson… geesh, I must be boredJ.

Sweet & Innocent

It’s all an act!