Goodbye 2011...

12.31.11

Today we had a great visit from my parents.  It was a nice, calm day.  Shelby got some good time alone with Grammie & Papa and I got to take a nice, long shower at the Kohl's House.  We have our room all decorated for New Year's.  We will celebrate "midnight" around 11 p.m.  One of the nurses was really awesome helping me think up a way to make a ball like (sort-of) the one in Times Square.  Can't wait to post the confetti-mess that will come soon...you'll have to see the pics tomorrow.

I am amazed we have been inpatient for 15 days now...she's been on the waiting list for 113 days.  Wow.  You'll probably say "what?!," but sometimes I forget that we're waiting for THAT CALL.  I am so wrapped up in each day, that I forget sometimes.  I sit down to write here and then I see the counter ticking away...oh yeah.  I so wish we were at home, especially knowing that we could still be waiting here a LONG time, but I still know that this is the safest place for Shelby.  This part of our life seems so surreal.  I cannot believe Scott and I are excited for THAT CALL.  We can't wait!  We want our little girl to be able to work on healing, not sliding down this slippery slope.  Maybe tonight or tomorrow "it" will come.  Would be a great way to bring in the new year.  Always hoping and praying...

May you all have a blessed new year!

Busy times

12.28.11

12.29.11

See why I'm too tired to do updates?!?!  We are SO BLESSED to have so many people make the drive in to Chicago to visit.  Seriously.  I just counted 39 different visitors!  That does NOT count immediate family.  WOW!  Very blessed.  I do have to try to balance Shelby's activity level (one can get quite excited just sitting there) with her oxygen needs.  Not fun for a 9-year-old to be told she has to stop talking so much so her O2 level can stay up :-(  She remains in good spirits, though, which helps me a great deal.  Scott, Riley and Avery leave in the morning :-(  That will be hard.  So hard.  I wish all 5 of us could be here all the time.  It would be great if THE CALL came tonight so we could focus on post-transplant recovery rather than be stuck in this pre-transplant waiting.  Please pray for someone to say "Yes" to organ donation...

Still here

All is well here.  Shelby's sat level has decreased a bit, but nothing shocking or unexpected.  I have pics to show with all the wonderful visitors we've had, but right now, I have my sweet little Avery next to me ready to snuggle.  Scott and the girls came to Chicago today and will be here until Friday morning.  I am at the Kohl's House with Avery and Riley tonight sleeping in a real bed :-)  So, off I go to snuggle and the update will come when it comes.  Night all!

Laying Low Monday

I had this long post typed up (argh!) and just lost it!!!  It was all about how wonderful our weekend was and all the visitors we had, but the pictures will do justice in showing you all that.  I'm just not up for retyping it.

12.24.11-12.25.11

Two for One

12.22.11

Click on this picture to see the full album of Thursday's activities.  

Shelby is doing o.k.  We are both more than ready to see Scott, Riley and Avery.   Her oxygen need has increased over the past few days.   It is now taking 5 liters, not 4, to maintain her sats.  This is very disappointing because once she needs 6 liters she needs to be in the ICU.  No more trips to the Brown Family Life Center, much smaller room...basically, a bummer.  Please pray that she can remain stable on the 5 liters.

Last Thursday Scott and I had a long day at Northwestern.  I was worked up to see if I'm a match to be Shelby's living donor.  I just heard this morning that I'm not.  My left lobe (the one they usually take for pediatric patients) has at least two arteries attached to it (they need for me to have only one main one).  Even if it didn't have that structural anomaly, my left lobe isn't quite big enough and my right lobe is too big.  Also, with the potassium problems I had last year, they do not feel comfortable operating on me.  This is very disappointing.  I did hear from the surgeon, though, that even if I was a match at this point they feel that a cadaver donor is the best for Shelby.  Because she's had previous surgeries, they feel that hers will be more difficult and they anticipate more "problems" once they're in there.  They would prefer a liver to come with all the "plumbing."  *If* Shelby would get worse to the point she would need to be on a ventilator, then her "score" would move up and they would consider doing a living donor transplant.  At this point they feel she is still in a pretty good spot with a pretty high score...they just need donors.  Once the holiday weekend has passed, Scott and I will contact those who have shown interest in donating and we'll go from there.  


Here are the pics from today.  

12.23.11

Lemonade

8:21 p.m.

This is how we roll.  We make great sweet, tasty, thirst-quenching lemonade out of the lemons we've been handed.  For example, this

 the fabulously soft purple (my favorite color) rug in "my" bathroom at the Kohl's House.  And this,

"my" bathroom.  So while it totally sucked to have the reality of "moving" into a room at the Kohl's House that will be my home for at least a couple of months, I am so appreciative and grateful for that soft purple rug under my feet as I'm cleaning up...and for my own bathroom.  I really am.  Please remind me of this as our time here drags on and I forget :-)


Shelby has always lived by this motto, although she does not know it.  "Making lemonade out of lemons" or "Just keep swimming" like Dory sings in Finding Nemo.  She can do it; then I can do it.  I miss Riley and Avery (and Scott) SO much, but I know this really is just a temporary and small bit of time in our lives.  


Shelby watched Evan Almighty yesterday and the night before.  She really loves that movie.  I was really struck watching it these past few times on how God did everything in His power to gain Evan's full attention.  Then I think of my life.  Is God delivering large amounts of wood to my house, having animals (2 of every kind) follow me (you have to have seen this movie to understand that)...trying His hardest to get my attention?  Or, have I already given it to Him?  It really hits me in the movie when God starts laughing at Evan's statement that building an ark was not in his plans.  God laughs and laughs and then says "Your plans?!"  My prayer tonight is that I am allowing my heart to be open to His plans, not mine.  His plans to love Shelby and take care of her as only her loving Heavenly Father can.  His plans that her "new" liver will come when it is time for it to come.  Thank you, God, for this day.


Sorry if my "theology" is a bit jumpy.  I may be a PK, but I do not have a degree in religion or theology.  It is just my heart speaking.

12.21.11

click on picture to open album!

Tuesday's update

2:45 p.m.
So finally I have a chance to do yesterday's update.  While we are staying busy here, it requires quite a bit from me.  She can only walk to her bathroom; everything else requires using the wheelchair and a portable oxygen tank.  She has to rely on me for her every movement when we leave the room.  Also, in the room, she has to stay in bed, except if she needs to use the bathroom.  This calls for me to get anything she wants that is not within her reach (and she changes her mind a lot).  She feels good enough to be doing things in bed (THANK GOD), but not o.k. enough to move out of bed on her own, nor can we have her doing that because she de-sats too quickly even on the 4 liters of oxygen.  Today, we went to see story time with Dot (hilarious, by the way!) and she wanted to come back to her room because she just tired out sitting in the wheelchair :-(  She did manage to do about an hour with the hospital tutor today, though.  She said they played a super-fun game and cannot wait to go back.  Enjoy the pics and please keep praying that my girl gets a "new" liver soon.  Thank you.

12.20.11

Remember to click on the picture to open up the whole album!

Busy

10:31 p.m.

Busy day.  Busy, busy, busy.  I'm pooped.  We had a FABULOUS visit from 3x liver transplant "veteran" Annika and her mom, Moreena.  THANK YOU!  Then Shelby was visited by some local film students about helping them with a project and Pastor James came to visit!  Wow!  We saw many of the medical professionals that have helped Shelby over the years and they all had time to stop and say "Hi."  Hope the pictures explain the busy-ness of our day.  It is so nice that I can put Shelby in the wheelchair, put a mask on her and take her down to the Brown Family Life Center for some fun.  :-)

12.19.11

Status Quo

5:23 p.m.
Here are the pictures that depict our day.  Please click on it and it will open up the album.  Enjoy!

12.16-12.18

10:00 a.m.
Not much going on here.  That's good in that Shelby isn't getting worse.  We'd LOVE to say "We got THE CALL," but that isn't the case.  At 4 liters of continuous oxygen and bedrest, Shelby's sats have been running in the mid-90's.  We all would be at 100% on room air all the time.  Her need for O2 is pretty great :-(  Last night I gave her a bath and she de-satted to 74% when she got out - she was on her O2 all the time :-((  I should have some awesome pics to post later as the therapy dogs come today.  Shelby is SOOOO psyched!!!  I'm psyched for her.

I miss my Ri and Avery so much...thank God for whoever invented Skype, although we had some connection issues last night.  Seeing and talking to my babes helps this Mama out a ton.  I'll post more later.

Heading to CMH

10:12 p.m.
We are here and settled.  Poor Scott has Riley's cold so he's keeping his distance.  If all goes well throughout the night, he'll go back home tomorrow to work Saturday and Sunday night.  It was miserable leaving Riley and Avery, but they are doing fine with my parents now.  Here's for an uneventful night!

4:02 p.m.
Shelby has had some de-sats overnight and today that we are not comfortable with.  Children's has a private room waiting for her on 6 West (the liver floor).  We will head in with in the next hour.  I will update again when we are all settled. 

In..out..in?

The decision on whether or not Shelby should go inpatient is not clear-cut.  As of last night, the doctor was strongly advising we bring her in.  Now, after their big Thursday afternoon meeting it was decided that it was o.k. to go on a day-by-day basis of us monitoring her here at home because there is NO guarantee that she will have a private room in the hospital.  Unless she cannot maintain her sats on rest and 4 liters of oxygen, then we will keep her at home where she doesn't have a roommate who has family and friends (and their germs) visiting.  There are several reasons to admit her (if she goes into respiratory failure, to keep her more confined to rest than at home and to have the nurses' eyes and monitoring available), but enough valid ones right now to not admit (GERMS!  It is SO easy to get sick at the hospital.  Really, it happens!).  So, we watch her closely...as we have been.  They really hate for us to have to come in the week before Christmas, but trust me, we'll have NO problem heading in if they have a  "new" liver waiting for our little girl.

Despite this semester being SO stressful for Scott he pulled off an B in Peds Theory, and A in Peds Clinicals and an A in Nutrition.  WOW!  I can hardly think of my name somedays....I'm SO proud of him!!!  May 2012 he will graduate.  I think he's a bit excited; me, too. :-)

Please continue to pray that Shelby's CALL comes much sooner than later.  Thank you. 

Night went well

6:04 p.m.
Heard from the nurse.  They want to see how she does in the next 24 hours and the "team" is trying to decide if she's better off at home or in the hospital.  They do not (nor do we) want her to go into acute respiratory distress here at home.  I did "experiment" and put the oximeter on her when she came out of the bathroom, had her walk up about 5 stairs and then read her sats.  They were 80%...on 4 liters of O2.  This sucks.  If its best for her to be at CMH, then so be it.  We'll see what the next few days bring...

4:06 p.m.
Our little friend, Jaisal, has his old liver out and the "new" one is going in!  His donor is already in recovery and smiling!  Turns out Jaisal was the other child with blood type A waiting at Children's for a liver transplant.   When I said last week that Shelby was in the top 2, it was because she and Jaisal had the exact same score.  Now that Jaisal is receiving his liver, Shelby is not only in the #1 spot at Children's, but in our region.  Yes, I do feel the need to repack my bags and am in "nesting" mode.  All the laundry is done and I'm making sure my desk is cleaned off.  Of course, poor Scott has a final tomorrow and Wednesday...he's just a little more than stressed.


Still no word from the nurse.  I gave her a call to check on things and Dr. Alonso has been in meetings all day so she hasn't seen her yet.  She said she would call me back today still...

10:26 a.m.
Thank you everyone for your prayers!  I felt surround by them last night.  Shelby slept great!  In fact, she has PINK lips this morning.  Unfortunately, it just reinforces that she does need MORE oxygen and bed rest to keep her stable.  What a bummer.  I think we're still going to be able to stay at home.  I'll know for sure this afternoon when I hear back from the transplant nurse.  The Hepatologist and Pulmonologist need to talk and decide what they think is best for Shelby's body right now.  I am still comfortable caring for her here at home, but will totally understand if they want her to be admitted.  Of course, that would mean she would stay admitted until she gets a transplant.  This is all very surreal right now.  I really can't believe that we are caring for our oxygen dependent daughter while she's waiting for a liver transplant....just sounds like someone else's life.  Sigh...

Hopefully right now our little friend, Jaisal, is preparing to head to the OR at Children's to receive a portion of his Dad's best friend's liver.  I haven't seen any updates yet so please pray for this family.  A few weeks ago Dad was to be Jaisal's donor, but when they opened him up for surgery they found they could NOT use his liver. :-(  A rare thing to happen after all the screening they do on living donors and a HUGE disappointment.  


That's all for now.  I'll update when I hear back from our nurse.

Grunting

I saw Scott briefly this evening (remember, he works 12-hour night shifts on the weekend) and I mentioned to him how I noticed since Wednesday that Shelby has been grunting a lot.  He said that he noticed that, too.  I asked him to check with the nurses at work to see if they knew what it was...then I googled it.  Grunting is a sign of respiratory distress.  :-O  I put a call into Chicago and the on-call Pulmonologist wanted to consult her attending.  She was thinking Shelby might have to be admitted to Chicago tonight.  Luckily, when she called back she had better news.  They do not think Shelby is going to have any acute respiratory failure tonight.  They told me to turn up her oxygen to 4 liters and have her rest...all the time.  I am monitoring her sats continuously and am sitting next to her to make sure she doesn't get wiggly (that makes her de-sat!).  I am to call her Pulmonologist first thing in the morning as they may want to see her and admit her then so she can be on the high-flow (6+ liters) oxygen.  If at any time tonight, I think she's getting worse I'm to take her to our local ER so they can stabilize her then transport her to Children's.  :-(

Please, pray harder than you ever have that her new liver comes VERY soon.

93 days

Shelby was listed 93 days ago with a PELD of -5.

Shelby received exception points 63 days ago that raised her PELD to 25.

Six days ago, she received more exception points that raised her PELD to a 30.

She still waits.   Please make sure your loved ones know of your wish to be an organ donor.

An evening out

This is my first "mobile" post.  I'm testing out doing it from my phone instead of my computer so forgive me if it looks strange.  We had a wonderful evening last night!  Avery got to have a sleepover at Grammie & Papa's and we took the big girls out to a nice dinner at Franchescos and then to RVC to see A Christmas Carol.  It was so neat how the cast came to talk to her after the play was done.  A night she'll never forget!  She's still snoozing away this morning and I bet Riley wishes she was, too!  Thank you, Erin, for making that possible!

(By the way, not like its anyone's business, BUT I know in the previous post I mentioned money was tight, but we thought it was worth finding a way to work things out to take our girls to a "nice" restaurant for this special evening.  Just wanted to clear the air.  I guess I felt the need to explain since we are fundraising for medical expenses.)

Waiting is...

tough.  Hell.  Messes with your brain, emotions, insert just about anything there.  Depressing.  SUCKS.

Hopefully some of you readers have found your way over here from Facebook.  Blogger's mobile version is great if your pretty much a smartphone-only type of person.  There is a blogger app for Android; not sure about iPhone.  Anyway, I think I will be writing more here and less on Facebook.  This way I can back-up my entries and save them whereas on Facebook they just roll off into cyberland.  Blogging has been an amazing way to keep a history for our family.  Anyway, thanks for coming over.  Please feel free to click on the "comment button" below and leave us a message, even if you're just saying "I was here."  :-)  We like that.

Back to whining.  Oh wait, that isn't whining.  That's stating our reality now.  This is hard SHIT.  There, I said it and I don't think anyone is surprised.  80+ days on the waiting list.  Seriously?!  Reading my kid's O2 sats at 65 or 72...heck, 88 - the "baseline" the pulmonologist wants her to stay above - still sucks!  In fact, the latest (Monday's) suggestion from that doctor, when I shared how her sats have been has been to limit her activity AND that if her sats start getting worse/staying worse then they'll admit her to the hospital for "respiratory support" until transplant :-(   NOT what we want to hear, but we have to do what's best for Shelby's health.  Yesterday, at the tree farm, she was having fun and moving around a lot, but her sats were 72% - :-O  As long as she was feeling good, we were cranking her O2 and letting her move around, but you can only look at her purple lips for so long...then we had to make her sit.  

I'll be honest and say it.  Not for help, but for those families out there feeling the same way.  Me not working all fall has taken quite the toll on our already tight finances. There's money worry, health/transplant worry, Scott's schooling worry...mix that in with trying to be a "normal" family and parent your child as if everything was "normal" because you know that's best for them when you really want to let them get away with bloody murder....yeah.  Scott and I are having a rough time.  Riley is having a rough time being a pre-teen and trying her best to *deal* with all this.  Shelby, she's still funny and rolls with the punches - so does Avery.  Ahh, for innocence.  Wish I had some.

Special Outing

Last Thursday Avery's preschool class took a field trip to Williams Tree Farm.   Even though Scott and I have always lived in this area, we had never been there.  It was a lot of fun.  We just *knew* we had to take Shelby there because they have tons of dogs running all over AND they had 2 litters of puppies!  Today we took her there :-) In fact, we took Riley out of school and all 5 of us went!  What fun!  Enjoy the pics!  All the girls loved the dogs!  I guess we're the only people who go to the tree farm to do everything, BUT buy a tree. 

Williams Tree Farm

Click on this picture to see all of them!

Got the points!

YEP!  Shelby's PELD is now a 30!!!!  I don't think that would change her being in the top 2 of children waiting at our hospital at the moment, but, trust me, those extra points will help. 

Blessed

This morning we were blessed with an awesome surprise!  It was partly a surprise to me; I knew about a bit of it.  Let me tell...

Our roof is quite steep (you'll see in the pics), but we love outdoor Christmas lights.  Scott tried to climb up there, but ended up slipping down and cutting up his hand pretty bad.  The girls were disappointed but understood it was just too dangerous for Daddy.  I spoke with a wonderful person this week and she asked "What can we do to help your family?"  I brought this up knowing that it would make all the girls smile.  This wonderful person made it happen; in 3 short days of talking to her we had a group of carolers from RVC's cast of A Christmas Carol and a whole group to brave the putting the lights up!  It was amazing!!! Everyone was so nice and Shelby (and Riley and Avery) were in heaven interacting with the cast.  THANK YOU, thank you, THANK YOU everyone who made this possible!!!

Tonight, when we take the girls out to see the lights I will add pictures of their reactions and how the house looks.

PICTURES OF THE REVEAL ADDED!

The Hanging of the Lights