Sunday, July 11, 2010

Sunday Sharing because we should be frugal with our money but Never with our Hearts, Our LOVE or our Compassion for others - Emerson White

This week on {Sunday Sharing} I wanted to do something a little different.  I am not going to feature a charity - although this child does have a non-profit charitable account set up through the Children's Organ Transplant Association (COTA) {HERE}.  My daughter has a COTA account as well and I can tell you that if you choose to donate to Emerson through her COTA account EVERY PENNY raised for her will be given to her family for transplant related can learn more about COTA at

This week I wanted to share with you a small glimpse into the story of an {AMAZING} little girl and that of her family.  Emerson White is the same age as my daughter...she is only 3 years old.  In her 3 years on this earth she has had 2 multiple organ transplants...that was not a typo.  She has had multiple organ transplants on 2 occasions.  She has lived in the hospital...not frequented the hospital a lot...I mean lived and raised out of state from her home in a hospital.  I "met" Emerson and have "watched" her grow up through an amazing support group I belong to and through her website  Emerson has fought for her life on so many occasions - so many times this child has proven that miracles do happen.  When doctors have told her mother, Erika, that there was no hope for her...she simply refused to believe it and has been by her daughter side every step of the way.  In doing so, she has had to leave her 2 young sons and husband at home...what she thought would be a short time period has turned into 2 years.

I share her story with you because Emerson {Finally} went home just a short time ago....home and then admitted back to her local hospital which quickly transferred her care to her other "Home".  It looks like Emerson has one more medical option left for her that may allow her to stabilize her little body...but if this option does not work then Erika has been told that there are no more options for her....these are Erika's words from her blogsite:

Submitted by Erika on Thu, 07/08/2010 - 2:49pm. 

I arrived last night with lots of questions as to how exactly Emerson’s central line “fell out”.  I’ve been at this a long time now & I can confidently tell you that just doesn’t happen (especially when it’s stitched to your skin).  I was told no one knows for sure but it appears that a volunteer may have accidently pulled it out when putting her back in the crib.  Okay… I can accept that.  Accidents happen.  I’m not thrilled about it, but am happy for an explanation that makes sense.
To be honest, I showed up last night with a bit of an attitude.  I was not happy about what was transpiring & there was no one to talk to.  I cleared out Eme’s hospital room with the plan to get out of here AQAP this morning.  I felt like I’d hit a wall with this team & just needed to get us both far from Omaha for a while.

It’s a new day today, though, & I’ve had the opportunity to talk to several people including the chief transplant surgeon, a member of the infectious disease team, & the NP (nurse practitioner).  She more or less runs the show up here & has been on vacation the past 2 weeks.  She missed a lot of the drama here & was generous enough to spend some time with me this morning re-hashing it all.  In the end she may have said the most sensible thing yet – she said she totally understands my want/need to do something & she totally understands my deep desire for that something to make a difference.  Unfortunately, though, she said they’ve all discussed it at great length & the overwhelming consensus is there’s just nothing left to do.  There is no something with any reasonable chance of making any difference at all.  So that’s where we are – at the end of our list of treatment options. 

I went further & said if this vesicostomy surgery doesn’t work & there’s nothing else to do I want this to end.  It’s so hard, it’s not as if Eme’s in the PICU on life support.  There’s no plug to pull.  She’s down the hall playing in the play room with a volunteer.  She’s breathing, walking, talking, eating…  To even have those thoughts in this situation is very, very difficult to reconcile.  As I’ve said before, though, if her only chance for a life is in the hospital, I don’t want that for her.  The NP said she totally understands & if this vesicostomy doesn’t work Emerson won’t live in the hospital battling infection indefinitely.  If this surgery doesn’t work the end is not far.  She is not several years away from her last infection… it will come much sooner than that.  Indeed, she said, if this surgery doesn’t work it will end.  That’s what I needed to hear.  Not sure exactly what I wanted to hear, but that is what I needed to hear.  This needs to resolve, one way or the other.  I’m at better peace today believing it will…

The plan this morning is to watch Eme for 24 hours & make sure her fever doesn’t return off antibiotics.  Assuming all goes well she’ll be discharged tomorrow morning & we’ll drive to Michigan for a week.  At first the team was a little surprised at this request (especially when I told them my original intent was to leave this afternoonJ), but they all agreed it would be okay.  I hope to take her back to the beach in August, but there’s no knowing at this point if that will even be possible.  I’ve learned to ‘strike while the iron is hot’ with Emerson.  Where there’s a small window of opportunity, take it! 
Eme’s next surgery is scheduled for 7:30 AM Monday, July 19th.  She’ll re-admit Sunday morning for pre-op.  I plan to be back in Omaha next Saturday.

I share a small glimpse into the trials that the White family is going through not to ask for money for them {although, if you can help please go HERE} but to ask for prayers.  I am a strong believer in the power of prayer.  If you don't pray I would ask that you think of this beautiful little girl and send some positive thoughts to her and her family...I simply ask that if you do pray...please pray for Emerson.

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