Got more points!

We got a call late this afternoon from Shelby's nurse saying UNOS approved more points for Shelby.  Her PELD is now a 35.   The highest you can go (unless you are listed for multiple organs) is a 40.  Then its status 1b or 1a - we don't want to be listed as those (as they mean the patient has <7 days to live).  We are in shock that our daughter's PELD is so high, but pleased that this should put her in a better spot to *compete* for a liver.  My birthday is Friday.  Guess what I want?  A liver for Shelby.

We've had 2 men that are friends of my friend send in applications to be tested to be Shelby's living donor.  Because we do not know them directly it is considered a "good samaritan" donation and there is a 30-day waiting period before the testing can even take place.  That was a bummer to find out today.  

Please, please, please let her liver come soon.  Her baseline sats have been running lower; her pulse goes above 140 when she sits up too long; she gets dizzy when she gets up.  She just looks rough.  Her body is working so hard to keep up.  Her situation is really fragile.  So scary.  

Tuesday's clinic

Mom, Riley, Shelby and I headed into Chicago Tuesday for clinic.  Shelby had an echo of her heart and all looked great - PHEW!!!  In clinic, though, her weight was up even more from 2 weeks ago to make it a total of 10 lbs. she's put on since mid-January.  It was decided that she has ascites and was put on a diuretic.  Dr. Alonso also said that now, with the development of the ascites, she can write another letter asking for more exception points.  The letter was sent Friday asking that Shelby's PELD go from a 30 to a 35.  UNOS has 21 days to respond; we pray it doesn't take that long.  Shelby remains in good spirits and we have our goods days and bad.  We're just ready to move on with life.  This treading/standing still is getting old.  I know, in due time her liver will come, but we're getting pretty antsy here.

Please join us this Monday evening at 7 p.m. at Christ United Methodist Church for a COTA for Shelby M. fundraising meeting.  Also, please read the post below of how we are looking for male living donors.  Thank you.

Today we found out that our latest person to be tested, Mary (Vormezeele) Erickson, is not a match. She, like me and our last person to be tested, Adele, has too small of a left lobe for Shelby. Thank you, thank you, thank you Mary for going through the testing. YOU are amazing!

The problem with the last 3 people tested is that their left lobes (which is the part they take for a child) were too small. Children's has recommended we look for male donors (or people larger than us previous people are). Male donors are more likely to have larger livers, which is what is needed for Shelby. That leads us to continue to look for people who are interested in being worked up as a living donor. If you think you might be interested, please read this, this and this carefully.  They tell you what minimum criteria is needed to be met to even be considered as a living donor. Shelby's blood type is A- so she needs a living donor that has A or O blood type.  There is an 18-page questionnaire that has to be filled out and faxed to 773-975-8671 or you can scan it and e-mail it to criazi@childrensmemorial.org. We would like as many as possible applications sent in to Children's before next Tuesday. They will look at all the applications and call in the person who they think might be the best candidate.

As a reminder, Shelby's COTA (Children's Organ Transplant Association) fund covers all expenses related to living donation. It is our health insurance that pays for everything medical. COTA reimburses the living donor and one caregiver for household and living expenses. They don't reimburse paychecks, but pay for household expenses (phone bill, utility bills, mortgage/rent, car payments, etc.) and expenses incurred while in Chicago. Expenses incurred the day of the evaluation are covered, too.

Shelby says...

Yesterday

Clinic went fine.  All is status quo, which is great because we don't want Shelby to be worse.  BUT, as my friend Moreena commented on Facebook "Glad to hear it went well, although status quo can be a hard place to stay when it's not a good long-term solution."  She hit it right-on.  This is not a good place to be.  The doctors thought Shelby looked fine for a kid on 4 liters of continuous O2.  They got to see just how low she drops when Scott took her to the bathroom and we could hear the oximeter alarm all the way down the hall.  When she got back she was at 80% and that was on the O2 :-O  They all agree she has some fluid in her legs and her weight was up about 5 lb from what I'm getting here at home.  So, there's probably general over-all fluid retention going on.  They want to see her back in 2 weeks for an echo on her heart.  This will tell us if the chronic low O2 levels are putting a strain on her heart or not.  One of the things they'll specifically be checking for is pulmonary hypertension.  Also, we'll be seen in clinic again.  Her labs looked pretty good.  For all you liver friends out there, they are:  total bili=1.3, direct bili=0.4, Alk Phos=368, total protein=6.3, ALT=40, AST=60, PT=14.7, INR=1.10, PTT=29.7, wbc=3.37 (that's really good for Shelby), platelets=92, hemoglobin=13.9 and hematocrit=39.3.  


Hopefully we'll hear word from the person who was worked up to see if they're compatible to be Shelby's living donor.  Hopefully what we'll hear is that they are a match. If not, the next person gets tested.  Hopefully, we'll get THE CALL first.  We do lots of hoping around here.


Here is a picture of Shelby and Dr. Jill from yesterday.  I ran into Dr. Jill in the hallway and she had time to stop in for a few minutes.  Shelby was thrilled!  :-)  Also, the guys from Snow City Arts came and hung out.  They are always great to see!  Shelby is still working on projects with them and they had me fill out a form to see if she can get school credit for the work she has done with them.  Very cool!

Sorry, this was taken with my phone.  Apparently it could not handle Shelby's white sleeve and the white sheet on the table together.  Shelby does have an arm there :-)

Clinic

9 a.m.

Today marks 4 weeks since Shelby was discharged from Children's so her doctor wants to see her in clinic.  We'll head off in a couple of hours when Scott is done with class.  There has been talk of asking for more exception points to put her in better "competition" with adult cadaver livers.  She still at the top of the list in our region for cadavers livers from donors under the age 17, but a higher PELD (score) would put her up there for more types of liver offers.  We shall see....I'll update later.

Stronger?

Lyrics to Stronger by Mandisa

Hey, heard you were up all night
Thinking about how your world ain't right
And you wonder if things will ever get better
And you're asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather

Oh, don't hang your head
It's gonna end
God's right there
Even if it's hard to see Him
I promise you that He still cares

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
And things can only get better
Believe me
This is gonna make you stronger
Gonna make you stronger, stronger, stronger
Believe me, this is gonna make you ...

Try and do the best you can
Hold on and let Him hold your hand
And go on and fall into the arms of Jesus
Oh, lift your head it's gonna end
God's right there
Even when you just can't feel Him
I promise you that He still cares

'Cause if He started this work in your life
He will be faithful to complete it
If only you believe it
He knows how much it hurts
And I'm sure that He's gonna help you get through this

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
In time it's gonna get better
Believe me
This is gonna make you stronger

This is my phone’s ringtone; that is, every time my phone rings I hear this song.  I put it on there when Shelby was listed – almost 5 months ago – to remind myself to hang on through this time in our lives.   BUT, it’s hard.  I know “easy” is not promised to us.  Ever.  I am struggling.  My faith isn’t going away; I’m not mad at God; but I am asking God “where is this going?”  For some things in our life it’s easy to sit back and listen for where He wants us to head; where we are to go – this is not one of those times.  It is unbearable with this.  Really.  My child - although anyone who comes to visit is shocked at how well she appears – is dependent on her life continuing by getting a liver transplant.  There is no getting better from here, only worse, without one.  Really?!?!?  “God, why are things this way?”  I know what Jeremiah 29:11 (NRSV) says “For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope.”   Sorry folks, that doesn’t offer me much consolation because of the verse before “For thus says the Lord: Only when Babylon’s seventy years are completed will I visit you, and I will fulfill to you my promise and bring you back to this place.”  Seventy years!  See, God’s promises can take a while.  NOT good for an impatient person.  Trust me, I have improved my patience a great deal throughout my life.  God has helped me understand how to do it, but it was my choice, and I did it.  I believe God is very powerful and always there, but I do believe that we, humans, play a lot into outcomes of circumstances by our choices.

So, back to Stronger.  What if I don’t want to be stronger?  I’ve been through a lot in my life.  What does God want me to be even stronger for?  What is in His plans?  How am I to work with them?  Tough stuff.  I can’t imagine not having my faith to help me right now, but it doesn’t make things all rosy and clear-cut.  In fact, I’m probably questioning more than if I didn’t have faith.  Sometimes, my brain just wants a break.  Today is one of those days.  I’m tired of my bouncy kid having to be tied down to a bed.  I’m tired of hearing the concentrator running 24/7.  I’m tired of going to my suitcase to look for clothes.  I’m tired.  I’m tired of waiting.  I’m tired of being exhausted, but not being able to fall asleep.  I’m tired of wanting so desperately for the phone to ring, but being scared to death that it will.  People say “how do you do it?”   I do it because Shelby is one of the great gifts I have received; because I love her with all my heart; because I’m her Mom; because all I want is good for her.

“Hand it all to God” and phrases of the such don’t quite work with my beliefs.  I do try to spend time in prayer to offer my worries/anxiety and thanks to The One who made me and it does offer me time to reflect upon my thoughts.  I hardly have this whole faith-thing figured out.  Just because I’m a PK doesn’t mean I have answers or scripture to spout off.  I am a “regular” person working through this life just like everyone else.  Trying to enjoy the time we have here, together, in our humanly bodies upon earth.  Why shouldn’t I enjoy things now?  Why do I have to wait for all the wonderful things that are promised to us in heaven?  Living life now and hoping I am doing my best towards others is my focus for now.  Getting my daughter better is my focus.  Keeping The Martin 5 going strong is my focus.

Wow.  What a lot of rambling.  That’s where my brain is right now.  This is therapeutic for me to write, so I do.  Maybe someday this will be one of those blog posts that helps someone out there with their struggles.

~From a Mommy continuing to hope for someone to be brave and strong in one of their worst moments to give my daughter the chance to continue her life.