HOME

Today we got the green light from Shelby's doctor to head home.  No donor, she's stable; not great, but stable; manageable.  They have complete trust in us that we can take care of her and we feel that way, too.  So, here I sit on my couch.  With a glass of wine (thanks Mom, what a great neighbor!) I am snuggled in the afghan my Mom crocheted for me. Riley and Scott are both studying.  Shelby and Avery are sleeping together in the hospital bed in our living room that home health delivered today.  It was hard as we got closer to home.  Hard knowing we went in to stay until transplant and have come home without that transplant.  My hope and faith in it coming are waivering.  I'll just be honest.  They are.  Forty days in Chicago.  40...and nothing.  At the top of the list for 50 days...and nothing.  Three living donors are no-go's.  Very frustrating.

I'm looking at this time home as a time to recharge our spirits.  This will only be temporary.  I pray within the month she gets her transplant.  That puts her at at least 2 months recovering...maybe, just maybe she'll be able to go back to school by mid-April.  That just about shoots her entire 4th grade year!  I want to get back to living, not treading.  This patience stuff is hard right now.  God is getting earfuls from me :-)

Tonight I'm tired, happy, overwhelmed, yet content.  We need help with meals, Avery play dates, Riley running, etc.  Just because I am home does not mean I can do everything.  Shelby's care will still take up quite a bit of my time and Scott is already up to his eyeballs in nursing school work.  Please send me an e-mail (the best way to get a hold of me) if you can help out with any of the above-mentioned at pnutsmom76@yahoo.com.  Thank you.  Please continue to pray that some family, in their deepest time of sorrow,  has the strength to say "Yes" to organ donation.

I'm too tired to put captions on all these, but they're basically all the medical supplies we have now, reuniting pics and pics of all the stuff we had to move home.

Some news

This evening I heard from our wonderful friend, Adele.  She went through the donor testing process at Northwestern 12 days ago.  She talked to the nurse at Northwestern and was told that she is not a match to donate to Shelby.  She has some "goofy" arteries, just like Scott and I do.  So...back to the drawing board.  If you're on Facebook, I've posted all sorts of info on how you can find out if you might be a possible match for our Shelby.

We are so thankful that we have Adele in our lives!  So, she's not a match, but what she did was amazing!  Thank you, thank you, thank you Adele! 

I'm going a bit nutty here.  Tomorrow I'm asking that since we do not have a donor to use right now, and since another person being worked up and getting answers on their testing puts us at least 3 weeks from a transplant, if they will re-admit Shelby or send us home.  I miss my girls terribly, but if its medically best for Shelby to stay close, then they need to re-admit her.  She is de-satting too much here; I just have to move her for too many things.  I am getting no break and am drained...and we haven't even gotten to transplant.  Of course, if we go home, I'm going to need loads of help because Shelby will still require all the care I'm giving her, but at least we would be The Martin 5 again.

As always, we can use prayers for a liver for Shelby and now I ask for continuing strength for all of us - Scott, me, Riley, Shelby and Avery as we continue our time apart.  Please also send prayers of strength to my parents as they are they are helping out on the home front on a daily/nightly basis.  Thank you.

No change

At Shelby's appointment today we met with 3 nurse practitioners.  All thought Shelby looked "stable," but were not able to answer my questions.  They said Shelby's doctor would have to answer those.  She's not back in town until Monday :-(  So, for now, we stay at Kohl's House.  Hopefully our *potential* living donor's results will be available for the surgeon to review tomorrow.   Please pray for a liver to come...soon...tonight...tomorrow...just come.

A New Way of Parenting

This is what a typical day looks like for Shelby now.

 

 With an occasional (2x/week) game of bingo on the hospital tv station (yes, she won again!) to look forward to.

 And super-uber cool visitors like Kayla who will play Spongebob games on Xbox with you because your mom really sucks at video games.

 And the all-too-brief, but oh-so-wonderful times of being a family of 5 again.

 But, mostly, just this.  Sitting, watching TV, playing her DS, watching youtube videos on how to train the dog she so longs for...this is Shelby's day.

I don't know if Kohl's House was the best move for her.  She desats more frequently than in the hospital because I have to move her around more.  The meals don't (and can't) come to her here.  She has to go down to the kitchen.  Just the simple movement from wherever she's sitting/laying is enough to drop her oxygen levels into the low 80's/high 70's.  It is exhausting for me here.  While she does sit and watch tons of TV, I do try to take her out for fresh air, but that's a whole production getting her O2 and oximeter and her all wrapped up and ready for the cold...I'm just not convinced this is the place for her to be right now.  Where is the "right" place, I'm not sure about that, either.  We were supposed to see her doctor today, but they were really booked in clinic today so they offered for us to come in the morning.  I will bring up these concerns.  Do they want her desatting that much?  What toll is that taking on her body?  How soon would they schedule a living donor transplant if a match is found?


Those are the physical concerns about Shelby.  The things that have me questioning this move have to do with her spirit, her well-being.  Shelby is so outgoing and thrives on interaction from many people.  She is not getting that here.  I see her becoming more withdrawn, moody.  I feel guilty for not providing her more stimulation, but I can only do so much.  I question how can I keep her going, keep up her "Shelby-ness," that sometimes overwhelming magnetic personality?  How can I support that?  The answer that pops to mind first (because I know her going back to school is impossible right now) is to have her readmitted.  There, magicians, clowns, volunteers, artists, nurses all came in the room and gave her enough interaction to make this "new" temporary way of life bearable.  But not only bearable, but in a way Shelby could continue to thrive, to keep up that fighter spirit.  Remember how I shared before that she said to someone "I'm not here because I'm sick.  I'm just waiting for my new liver."  THAT spirit.  But it has wavered this week.  How do I continue to keep her going forward?


I also think a lot of how this whole situation makes it so hard for me to do what I've always wanted to do my entire life - be a Mom.  I knew there would be an extended separation from Riley and Avery, but couldn't exactly imagine what it would be like.  Now, here I am, living it.  Trying to be a part of their lives, still, but also knowing that its o.k. for Avery to call me Grammie when she sees me right now.  That Riley might run to my Mom for something before me.  Its o.k.  Its how we're getting through it.  The selfish, silly part of me takes over sometimes and says "will they remember me?"  I know, of course they will.  My arms long for their daily hugs, though.  Kissing their foreheads.  Sigh...so I try to find a *new* way to parent my children.  The one that needs oh-so-much of me right now and the ones that need me, but can't have me right now.  This is tricky and tough stuff, folks.  But, as I've said before, it is our reality, so with that, I will continue to make the best possible lemonade ever.

Way behind on this

Some blogger I am!  I have over a week to catch up on!  Sorry!!!

OK.  There's so many pics, but I am going to pick a select few for each day....
Sunday, January 1st - Shelby and Breandan (forgot to put this with the other ones from Adele, Breandan & Leann's visit)

Monday, January 2nd - Shelby watching TV playing hospital bingo - SHE WON!!!

Wednesday, January 4th - Shelby lookin' pretty with 2 (more!) new stuffed animal friends.  On this day she had an IV put in and the allergist did a test to see if she could handle (without a reaction) the antibiotic they give during transplant.  It is in one of the families of meds that she is allergic to, but all was o.k. with this one.  Yay!   Mommy was a bit on-edge during it.  All's well, though. :-)

 

Thursday, January 5th - Alise, a friend of a friend of a friend (really, something like that!) came to the hospital to trim up our hair.  She was fabulous!

Later, Kayla, a girl from my hometown who's family I was very close with (my brother and I got to have her grandparent's as "neighbor grandparents" before any of her siblings or cousins were born...and I actually babysat her, her sister and her brother :-O) came to visit in the evening.  She was a ton of fun and game for just about anything.  We really enjoyed her visit!

Friday, January 5th - Scott came into the city the night before to help me sort out some things.  During rounds Thursday the attending announced Shelby should go home.  I was very shocked as NO ONE had mentioned this at all in the 20 days we had been there.  Naturally I had had plenty of questions about this change of course.  Before he left the room Shelby asked a question and he made a rude remark to her.  I was NOT happy.  I requested a care conference with her primary hepatologist.  That did happen, but the particular doctor that made the rude remark was there until he treated me poorly and raised his voice.  At that point I said the discussion would not continue with him present.  He left the room.  I could go on and on about him, but I won't here.

This left a ton for Scott and I to talk about.  The consensus was that they had observed Shelby for quite some time, they were not concerned of anything acutely happening to her and ultimately whatever we chose (to stay inpatient, move to the transplant housing-Kohl's House, or go home) they fully supported.  We were leaning toward staying inpatient as that is a big reason why she has stayed so stable.  She is limited in what she can do and has a million eyes on her.  There was a change, though, in some of our support at home and we no longer have some people to help that said they would, so we felt that we needed to work towards getting home.  Yesterday we moved Shelby to Kohl's House.  Scott came in to help out and has to be back home to work Thursday-Saturday nights.  Then he starts school on Tuesday.  Shelby has to be seen in clinic here Tuesday afternoon.  Where we go from here?  We don't know.  We pray she stays stable.  We pray a liver comes any moment.  We pray that when/if we decide to go home and wait that we can line up enough help as Shelby will tie up most of my time, yet I will have two other children to attend to.  My parents are willing to bend over backwards to help.  We just don't want to burn them out because this is a long-haul.  Please, say a prayer (or two) for Scott and I to have faith in our choices we make for Shelby's well-being and health.  Not to sound like we're not thinking of Avery and Riley, but their life is not at risk here.  Shelby's is.  Plain and simple.

That is why its taken me so long to get this blog update done.  First of all I was behind a few days and then all that came up.  I heard today from a friend that she is schedule to be worked up tomorrow at Northwestern to be Shelby's donor.  Please pray for her.  This is actually the second person that Northwestern has screen besides myself.  I know there's many others out there, too, with donor packets in hand ready to send them off should this donor not work out.

Enjoy more random pics from last week! 

Absolutely LOVE THIS!  Papa and my girls!

Papa, Grammie, Avery and Shelby playing Cooties.

Shelby, Frankie and Annika (3x liver transplant).  They were in town and came to visit.  The girls giggled and watched YouTube.  It was wonderful.  And, oh yeah, I got to visit with their Mom, Moreena.  :-)

Shelby and one of the Rainbow (therapy) dogs.

Shelby sporting her new headband from Nicole, one of Scott's nursing classmates.

Nicole, Shelby (making a weird face) and Nicole's Mom, Lynette.

Getting her bed at Kohl's House all ready.

Shelby, Noelle (fabulously funny and wonderful) and Jack (cute as can be - he had a liver transplant and Daddy was the living donor).  Noelle brought Shelby an awesome gift - a pink dog-bone shaped poop bag dispenser with pink baggies with paw prints on them!  Shelby will be picking up after her puppy in style!!!

One last visit from the clowns.  The "nurse" clown happens to be a friend of Noelle in the above picture.  Small world!

About the 50th and final trip to take our stuff over to Kohl's House.  Is he a Dad of girls or what?!?  Like his big pink teddy bear and bright pink bag?  That's my guy :-)

Shelby all ready to go.

The note she left for the nurses.

We had wonderful nurses.  Leah happened to be Shelby's nurse the past few days.  Leah rocks!

Angela, one of the unit secretaries.  She was just fabulous!  She would personally deliver stuff to Shelby's room just so she could come hang out in the cool room. 

All comfy in her bed at Kohl's House!

Still here...

Just wanted to apologize for not updating.  Shelby is still the same.  I will do a full update tomorrow.

A New Year

First of all, enjoy our pictures...

1.1.12

(remember to click on the picture to see the entire album)
How do you do it?  I get asked that quite often.  First of all, let me tell you I'm quite great at "faking it."  I will probably be a train-wreck when we're finally back home.  It will most likely hit me like a ton of bricks trying to get back to our "normal" life.  BUT, for now this is what I'm relying on to keep me strong.
1)  I'm in a small room with my 9 1/2-year-old sweet daughter who tells everyone she's not here because she's sick, but just because she needs oxygen and is waiting for her liver transplant.  Hello!  If she can view it that way, then the least I can do for her is to see it that way, too.  She is SO positive.  It is contagious.
2)  God.  I know He's there for me/us no matter what.  Good or bad, I know I can rely on Him for comfort and strength.  Enough said.
3)  Scott.  I know he's doing his best to go from student/CNA to housewife/man and he's rockin' it.  He's a super Daddy and my girls are so lucky to have them as their Daddy.
4)  Scott.  He's a fabulous husband.  While we're mostly communicating by text, he's there for me.
5)  My parents.  They pick up everything else that Scott & I can't/aren't able to handle.  Riley is none-to-pleased that Grammie has to be more "mom" than "Grammie" right now, but she just doesn't realize how lucky she is to have that lady watching over and guiding her.  Papa is there as an ear always willing to listen to *anything* she has to say. 
6)  Everyone else.  I know you all are there.  I do.  So many offers to help have been made and, trust me, you'll be called upon.  Right now its "relatively" easy to handle things as Scott's parents came back from Texas to help, Scott is still on winter break and Shelby is stable allowing me to be here and Scott be home.  If any of those factors change, expect your phones to ring.
7)  How can I NOT stay upbeat?  This is our life.  While it many not be under ideal or desirable circumstances, it is what it is.  It is still the cards we've been handed and we are expected to play them the best we can.  I know our life will go back to "normal" one day.  It will.  Right now, I'm taking this as time to spend with Shelby and hope/pray that I can find ways to give Avery and Riley some one-on-one time.  For example, while I'm not a big shopper, my tween is.  So, despite it being bitterly cold here in Chicago today, when she arrives we're grabbing a cab and heading downtown for some window shopping.  Just some Mommy and Ri time.  Can't wait!  She's growing up so fast, I don't want to miss it...the good and the bad.  When she rolls her eyes at me or has a meltdown over something weird (to me) I think, "O.k., she needs some guidance from me/us AND, wow, she's a really normal kid.  Tweens do this.  Yay for normal."  Really...then I want to strangle her...just kidding.  Avery, well she's hanging in there.  I hear there are some "I miss Shelby" and "I want Mommy" moments, but she's grown up with this.  Not this long of a separation, but Shelby has always been sick that she knows.  This nothing new to Avery.


So, there's "how I do it."  There will be bad days coming.  It will get rough.  But, we will persevere.  We just will.  I'm not trying to toot my own horn with sharing this.  It just "how I roll."  The truth of how I'm approaching this life we've been blessed with.  Thank you God for all you've given us.