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

Waiting to hear from UNOS

Dr. Alonso wrote UNOS yesterday asking for Shelby's PELD to go from a 25 to a 30.  Dr. Alonso also said that she thinks we need to a get a living donor worked up.  I said to the nurse "That means Dr. Alonso is saying Shelby is very sick."  She said "Yes." :-(   I will fill out the living donor packet and send it in and wait to hear from Northwestern on when my testing will take place.  Somehow, somewhere (soon) we need to get this kid a liver.

O2 all the time :-(

Tuesday we had a heck of a time keeping Shelby's oxygen levels up.  They were in the low 80's to high 70's range with just a tad bit of movement.  We kept having her sit when her lips turned purple and her hands turned dusky only to have her sats go up to 88-90%, then immediately fall again when she started moving.  I called this info into Chicago the next morning and the pulmonologist ordered her to be on 2 liters of continuous oxygen and upping it to 5 liters (if needed) if her sats fell below 88%.  We found out after a few minutes of her being on the O2 and then checking her sats that 2 liters was NOT enough to keep her above 88%.  Since then she's mostly been on 3 1/2 - 4 1/2 liters.  :-(  Monday her doctor will be writing another letter to UNOS asking for more exception points in light of Shelby getting sicker so quickly.  Prayers, please, for a "new" liver soon.  As much as I love the comforts of home, I'd rather be sleeping in an uncomfortable hospital chair if it meant my daughter having a chance to be healthy.

Sat monitoring update

Shelby did the 6-minute walk test…twice.  The first time (which I’m sure is standard for the test) they told her to go at her own pace and there was a chair if she felt she needed to sit.  Shelby was not thrilled about the test at all so she sat…3 times.  She admitted to me later that she did not want to do the test so she didn’t try very hard.  I got on the phone with one of her liver nurses and expressed my concern that we were not caputuring her daily activities and the low sats that accompany them….so what was the good of this whole admission?!  She got the test reordered.  Shelby did the whole test without sitting.  I let her pick out a stuffed animal from the gift shop for her effort.  My LF friend, Noelle, was visiting and was a FABULOUS cheerleader.  Thank you Noelle!  So the lowest she went during the test was 81%, but she has had sats as low as 78%.  For now, we are in the Brown Family Life Center to keep her moving and we keep spot checking her.   We should be discharged just in time for rush hour traffic…on a Friday…yay…not!  Thank you all for checking in on us!

Actually I wrote this and then Shelby’s tummy started hurting so we headed back to the room.  She’s pooped; done for the day.  I’ve asked if they can expedite our discharge so we can get a little ahead of the traffic.  They’re working on it.

Fun with Funny Bones Improv that performed at the Brown Family Life Center

Met Minnie & Mickey (again)

Mickey taking interest in Shelby's Headbanz game

Shelby and one of the dj's from Radio Disney

Another Radio Disney dj

Shelby and Noelle, Jack's Mom, from Liver Families

Shelby and the respiratory therapist doing the 6-minute walk test

Planned Admit

Shelby will be admitted to CMH tomorrow for the monitoring of her sats.  They will most likely have her continuously hooked up to an oximeter and she may possibly have a blood gas drawn.  We pray that the doctors get the data they need to be able to get more exception points for her from UNOS.  Just the two of us will be heading in as Daddy's school/work schedule is VERY full right now.  I'm so lucky to have Scott to tag-team during hospitalizations and I know this isn't a "sick" admit, but I would appreciate prayers that I handle everything well.  I remember how lonely it was being in Chicago with Shelby in 2009 when she was taken in by ambulance and waiting (gasp! making fun of myself here!) a day-and-a-half before Scott could make it in.  Please pray for strength for her if she has to have a blood gas drawn (arterial stick in wrist - yuk!). 

RILEY TURNED 12 YESTERDAY!!!!  Here are some pics of our beauty!  Love you Ri!

Decline

Shelby's sats have gotten worse lately.  :-(  Her baseline sats will go to 90-91% if she sits for a while, but while she's on the move (just regular movement around the house) they drop down to the 75-79% range.  NOT GOOD.  Chicago is trying to work out an admit for next week so they can monitor her sats and have them on record to ask UNOS for more exception points.  Her lips will turn very purple and her hands have been turning dusky.  She is still our Shelby; pushing everything to the limit, not backing down.  In private, though, she'll admit to me that she is having trouble breathing. Trouble playing at recess, going up and down the stairs, etc.  Tonight is Riley's birthday slumber party and Shelby asked me to bring her oxygen down to the living room so she can have it when she sleeps tonight.  :-(  Please, new liver, its time.  We NEED that call.

Home, but....

Sorry, I didn't realized that I forgot to update this with "HOME!"  We were let go late Thursday afternoon.  Friday went well until 6:15 p.m. when Avery began vomiting.  About 3 hours later she had vomited about 18 times and there were flecks of blood in what was coming up.  The on-call Pediatrician said "take her to the ER."  Scott was at work, so Dad came and stayed with the big girls while Mom drove us there (and stayed ~ THANK YOU!) and I sat with Avery and caught more vomit.  She was miserable.  Long story short, we didn't get home until 4 a.m.  It was determined to be a version of what Shelby had.  They gave her IV Zofran and fluids.  Poor thing had a urine culture collected by catheter :-(  She was VERY brave.  She slept well once home and we just woke up less than an hour ago.  We have a script for Zofran to keep the vomiting away.  She is running a very low-grade temp.  Despite being given the IV fluids and drinking Gatorade this morning, she still has not urinated since before this all began last night.  I need prayers that she starts going and that the fluids she's taking in stay in.  Also, please say a prayer that this virus stops with her and doesn't taken down Riley, Scott or me. 

Shelby all ready for her "princess" ride out of the hospital.

Stopped on the way home from the hospital at Montessori to see Mrs. Lundgren

Sick baby in the ER.

Putting on such a brave smile after her IV was put in.  Daddy was working, but snuck down to be there for the icky IV and urine catheter.  He needed to wear gloves and a gown because his patient had all sorts of contagious stuff. 

Her IV.  It took 2 pokes. :-(

Shelby and the awesome Colette from RMH's Child Life.

Avery and Grammie having quite the deep conversation.  Avery kept saying "this is taking so long!"

Shelby and Mrs. Marshall, a volunteer at RMH and my *old* 4th grade teacher!

Of course we decorated Shelby's hospital room.  This time it was a Halloween theme.  If you can't make out her sign, it says "Anti-Boo-Otics."  Funny kid.  She came up with that all on her own!

Discharge?

1:34 p.m.
Waiting on the final o.k. from Dr. Deutsch - he is supposed to be here this afternoon - that we can go.  Sigh....

Wednesday

Shelby is looking much better, eating and still fever-free.  They want to give her a full 48 hours on IV antibiotics and make sure the cultures don't grow anything - 48 hours will be around Midnight so hopefully all will go as planned and we'll get sprung tomorrow morning :-)

Better Today

Fever is gone.  Tummy not hurting as much.  Yay!  Still getting IV antibiotics.  Maybe a discharge tomorrow evening?  She is smiling again.  We had a visit from Grammie and Avery this morning and then Daddy, Riley and Avery will come later this afternoon :-)  Looks like "just" a virus.  Let's hope it stays that way.

Admitted

Last night Shelby had tummy pain and it was bad enough that she didn't eat supper, made it hard for her to fall asleep and woke her at 5 a.m.  I called right away at 8 a.m. to get her in to see her GI.  He saw her at 3 p.m. and by then she had a low-grade fever of 100.  He ordered labs and an abdominal x-ray.  By the time we got home her temp was up to 101.5.  We called our GI again and he said to give it an hour.  Her temp was still up then.  He wanted her to be able to go to immediate care and get an antibiotic shot, but she's allergic to too many meds for that.  So...she's been admitted to Rockford Memorial for IV antibiotics.  She's feeling rough and looking a little jaundiced.  I'll update again tomorrow.

She got 'em!

UNOS awarded Shelby the 25 points.  Game on, people, game on!  Anytime, probably (and hopefully and optimistically) sooner than later, we will get THE CALL.  Until then, if all's well, I will most likely be quiet on here so no need to worry if you don't see anything. 

Take care~

Tomorrow...

....will be the 21-day deadline for UNOS to give an answer on Shelby's exception points.  I do know that Dr. Alonso, in her rebuttal asked for 25 points instead of 28 because that is what some centers said they would grant.  I've been told, too, that Dr. Alonso was very direct in her letter asking for Shelby's points to be reconsidered.  It was explained to me that the center's in our region (Region 7 - North Dakota, South Dakota, Minnesota, Wisconsin & Illinois) are not all pediatric centers.  Sometimes the voting party at those centers need to be reminded that they are looking at a pediatric patient's situation, not an adults.  Please, God, let Dr. Alonso's plea have been convincing enough to get Shelby these exception points!

Shelby is doing well.  She had a virus last weekend that she passed along to Avery who passed it along to Riley.  Riley missed school today because she felt so rotten and, as I type, Avery is coughing up a lung.  Shelby, surprisingly so, is resting peacefully on her oxygen.  Scott and I have talked about, but have not decided if we will keep Shelby attending school if she gets these exception points.  We hate for her to be home in "isolation," but would be devastated if they had to turn down a liver for her because she was ill.  We haven't made a decision yet; we're waiting on hearing from UNOS.  We'll see what the team thinks, too.

Scott is still plugging away at nursing school.  It is about half-way through the semester for him so he will wrap up his Renal clinicals and start on Pediatrics soon.  That means "finals" for him, though, next week.  He is one stressed-out, worried Daddy.  Please say some prayers for him.  That he can concentrate on his schoolwork until she gets THE CALL.

Tonight I packed up my toiletries and some odds-and-ends for my long upcoming stay in Chicago.  I will so miss sitting here on my couch, snuggling with my Ri and Baby A....the list goes on.  I tell myself it will be temporary, but it doesn't make me feel much better. 

I will update when we hear on UNOS' decision.  

Exception points DENIED

Yes, I found this out while driving in for Shelby's cardiologist appointment.  First of all, her heart looks great.  We just need to keep it that way.  UNOS denied the exception points because they wanted an arterial blood gas reading.  It has to be below 60mmHg for them to give her the exception points.  A LOT of strings were pulled while we were there Tuesday and it was worked out that she could have the ABG drawn.  An ICU attending was available to do it.  They had her walk on the treadmill for a few minutes and her sats fell to 78%.  Then she sat down and they started the draw.  They didn't get it the first time and by the time they did get it she had been sitting long enough that her sats were back to her baseline of 90%.  She was such a trooper through such a painful procedure.  Sadly her ABG was 64.5 - low, but too high to submit to UNOS.  Her team is talking and trying to figure out what to do next.  They feel it shouldn't be this hard to get her exception points.  We agree.  Today is the first time she's gone to school this week.  She's just been too tired the other days.  Her appetite has been poor and she has lost 2 pounds in 2 weeks.  This is something we need to keep a close eye on.  I had a thirty-one open house Tuesday night and she was at 110% because she was so excited to see a favorite person from her old school, but promptly dropped on the couch when the last person left.  Poor kid.  I am getting mad at her liver.  I am thankful it has held together so many years, but angry to see what it is doing to her now.  C'mon exception points...

Cardiologist

We have to be in Chicago tomorrow morning for Shelby's annual visit with the cardiologist.  Usually these are long, hum-drum clinics, but we actually have something to talk about now - her Hepatopulmonary Syndrome.  We're looking for more direction on how much/how often with the use of the oxygen.  Shelby's sats have been dropping even lower.  We've had her on as much as 4 liters of oxygen at night.  That's up quite a bit from the .5 liters we started at about a month ago.  I'm afraid her HPS is progressing rapidly.  :-(  This is such a scary time, but I try to focus on all the good that will come for Shelby when she gets a healthy liver.  We still have not heard on her exception points being granted.  She's only been listed for 11 days; UNOS has 21 to respond.  Sigh...time for my girl to get healthy.  She went to a birthday party Saturday afternoon and it took her until this afternoon to get her strength back.  That's not good....

Tuesday Ultrasound

Yesterday Shelby had an abdominal ultrasound so the surgeon could see what's going on in there - a little pre-planning and sneak-peak for transplant.  All went well, I think.  There was some question about whether or not her portal vein was seen.  Its pretty darn important.  We'll see what they say.  It doesn't change her need for a transplant, but it could change what type of graft she can get.  Right now (before the ultrasound) it was a whole or split liver.  That might change if there's problems with her portal vein.  

We walked - well, 3 of us walked, 1 was in a wheelchair and 1 in a stroller - around the Lincoln Park zoo.  My Mom had not been there and throughly enjoyed it.  She took tons of pics, but I'm too tired today to put them on here.  We also stopped by Build-A-Bear because it was very important to Shelby that she make her own bear.  She still loves Lovzey & Keisha (her other 2) very much.  I figured the kid deserves another if she's going to have to go through a transplant.  'Nuff said.  She only made it half the day at school today.  Too tired.  After she eats lunch, I'll have her put on her O2 and lay in our bed.  I'm ready for her to feel better.

ON the waiting list

Just got a call from Chicago that Shelby is ON the waiting list. Right now her PELD is -5, but they are appealing for a new "score" of 28 due to the Hepatopulmonary Syndrome. Amazingly calm at this point.

The Evaluation

We do a lot of waiting!

Shelby with Dr. Jill & the flower she brought her from Grammie & Papa's garden

Yesterday was incredibly l-o-n-g, but a lot was accomplished.  We met with all the members of "The Team."  The Transplant Team, that is.  From 1:15 - 5:45 one after another would come and talk to us; when they left, the next came in.  It was exhausting.  Shelby did really well.  We still have to go in for an abdominal ultrasound before transplant, BUT I should hear today or tomorrow that she is on the waiting list.  This is a scary time for us.  Exciting, too.  Scary because transplant is such a big thing.  Very risky.  Exciting because Shelby will no longer have liver disease and will feel better with a successful transplant.  Because of her Hepatopulmonary Syndrome, the doctors will be asking UNOS for 28 points on the waiting list.  We shall see what she gets....I will let you know when it is "official."

She only made it about 45 minutes at school today before she needed to come home.  Yesterday exhausted her.  Today she is resting in our bed, wearing her oxygen.  Hopefully she just needs this "recharge" time and we pray that she can return to school tomorrow. 

***Scott just informed me that he could not comment on here.  I forgot to change that setting back to how it was.  I think I have it fixed now. :-) ***

They know

We realized that Scott didn't have to work tonight AND heard the final word from Chicago so we told Riley & Shelby after school.  They took the news amazingly well.  Shelby started to cry & wanted Riley (we had taken her to our room to tell her on her own).  Once she hugged Riley & knew that her sister knew, she completely changed her tone and was joking.  Both of them seem o.k.  Better than Scott & I.  We let them know that it was o.k. to ask any question.  Then they wanted to go play.  Wow, wish I was that resilient.

The ball is rollin...

I got a call late this afternoon that Chicago wants to see Shelby Tuesday for her transplant evaluation!  I think they sped things up after I called today letting them know that the past few days she has been purplish on the inside of her lips and her sats have quite often been only 84%!  The pulmonologist said to have her wear her O2 more at home and today when I got them from my Mom's after school, she was so tired she wanted to ride in the wheelchair (my parent's have one) home.  Umm...we only live next door to them.  I hate seeing her like this!

Scott & I are so nervous to tell her!  We're going to do it Saturday morning over donuts and we'll tell Riley & Shelby separately.  This sucks....

Shelby WILL be listed

****What you are reading the girls are NOT aware of.  We have not told them yet.  Please be sensitive to this****

Today I heard the "official" word from Chicago that they WILL be listing Shelby for a liver transplant and appealing to UNOS for exception points due to the Hepatopulmonary Syndrome.  Exception points are points given for certain complications.  Specific labs & information are used to give a person a "score" that determines their place on the waiting list.  When you have complications that are not represented by that score then your doctor can ask for exception points.  Your case is then reviewed by UNOS and either they give the points or they don't.  HPS (Hepatopulmonary Syndrome) gives you automatic exception points.  From what I'm reading, 28 to be exact.   We knew this day was coming at some point, but now that its here we are scared.  We are very optimistic that Shelby's transplant will make her feel better, but sometimes you are just trading in one set of problems for another.  There is really no choice in this situation, though.  HPS is not reversible any other way.  Liver transplant is the only way to make it stop.  Oxygen was delivered yesterday by home health.  Shelby is to use it for comfort.  It doesn't help her oxygen saturation, just can make her more comfortable.  We are not ready for this, yet have been preparing for it for 9 years.  I just want my Shel-belle to be better.  I will keep you all updated on when she is listed.  We would appreciate prayers.  Thank you.

:-(

Shelby's O2 level fell to 75% during her test, but mostly stayed at 79% - NOT good.  The cardiologist has to do the "official" reading of the test, then that info will be passed on to the pulmonologist, THEN her hepatologist.  Then, we hear.  Insurance called today denying the oximeter unless the patient is on oxygen at home.  After relaying this to the pulmonologist's nurse, it looks like Shelby will be on oxygen.  Sigh...we don't know what all this means yet.  I will keep everyone updated.  Please pray.

Shelby and her Pillow Pet that she got for doing so well on her test.

Silly Shelby hugging her favorite 7-Eleven that we usually stop at on the way in and on the way home (bathroom breaks) from Chicago.  What a nut!

Ready for the test to start.

Patiently waiting.

It only took 8 days!

So here I am (finally) doing the update for last week's appointment.  Not too shabby, eh?

Shelby's surgeon & hepatologist were both happy with her growth.  Her wbc & platelets looked alright; nothing like we (us & them) expected after surgery, but we'll take it.  The blood was flowing good through her shunt so she was taken off the Plavix - yay!  Her Vitamin A level is quite low (always has been a battle to keep that up) so now she needs to add a Vitamin A supplement to her regime.  Drop one pill, add another :-(  Her oxygen (O2) saturation level was low, though.  90%.  It needs to be closer to 98-100%.  It used to be.  90% will get you put on oxygen if you are in the hospital.  Not a huge surprise, but sort-of after her "normal" PFT readings in June.  We were hoping they were a fluke, but when we got home we borrowed our doctor friend's portable oximeter.  I spot-checked Shelby's O2 a lot.  It wasn't good.  It was not a fluke in clinic.  In fact, after swimming (and then warming up) Shelby's O2 was only 84% :-( :-( :-(  NOT.  Good.  At.  All.  This prompted me to call her pulmonologist's nurse and relay all this new info to her.  She spoke with him and he ordered an oximeter for Shelby through home-health and wanted her cardiac stress testing bumped up from September.  I got a call today that they had a cancellation tomorrow so we will be abandoning packing for a day - we move on Sunday - and heading in to Chicago.  I don't know if we'll get the official results tomorrow, but Scott and I will be able to look at the computer screen and see what's going on.  Unfortunately, we know too much about the medical world (for non-doctors, that is) and will be able to get a pretty good grasp of the situation.  We need an answer as to why her O2 level is so low and most likely the answer is Hepatopulmonary Syndrome. Low oxygen saturation is the 3rd criteria that Shelby did not have, but seems to now.  If she has HPS, then she will get put back on the waiting list and receive many exception points to put her high on the list.  They don't mess around with HPS and for good reason.  Low O2 sats can take a toll on your heart.  Enough said.


Moving, 2 deaths from Durand church family this week and now this.   Prayers for strength my friends, prayers indeed.  Thank you.

Please do not be shocked...

but, I am not just changing the header picture.  I am actually doing an update!!!

Let's see, where did I leave you all hanging...Shelby's PFT (Pulmonary Function testing) went fine.  BUT, her Pulmonologist still wants her to have a pulmonary stress test.  That involves a treadmill and doing the PFT's.  Shelby hates this test.  It is hard for her.  She's had it once before.  She has to have a Cardiologist present for the test since she's followed by a Cardiologist.  Whatev.  This delays the test until September, but all her doctors feel its o.k. to wait until then.  She has been doing well this summer with little to no chest pain.


She has done 2 weeks of day camp, and, like years past, has LOVED it.  I am very pleased with the staff at Camp Winnebago for handling the 6 meds I had to send with Shelby to take every day very well.  There is no way to work her meds to less than 5 doses a day when there are 15 meds resulting in 30 pills a day.  


Tuesday she has an abdominal ultrasound to check the status of her shunt and she sees her Hepatologist & Surgeon.  LONG day in Chicago for Shelby and her parents!  Please pray that all looks well, specifically that her white blood cell count is normal, that her platelets have increased and that her spleen has shrunk since her last ultrasound in March.  Hopefully (fingers crossed) she can stop taking the Plavix.


Riley just got back from a week at girl scout camp.  While it became very tough on this Mommy mid-week missing her girl, Riley had a blast!  


Avery did 2 weeks of 1/2-day Kinder Camp through Camp Winnebago and LOVED it, too.  Yay!  


Scott & I have been busy packing as we are moving to a brand-new house August 1st.  Yippee!  We will be renting it so we are NOT gaining homeowner responsibilities other than having to shovel the snow in the winter (they do that for us where we are now).  We just decided we needed MORE space and when our rent went up here, we started looking at houses.  We are very happy about this.  This move puts us in the Harlem school district, not Rockford.  While this is really good news in the long-run, it is hard to leave our Rockford public Montessori school.  The girls have mixed feelings about going to a "regular" school, but I know they will do just fine.


Please do not hold high expectations of me and trust that I will post an update after Tuesday's appointment, but, like usual it is my goal to.


Hope everyone is having a great summer!

Lots going on!

Tomorrow we head into Chicago to see Shelby's Pulmonologist.  She's been doing o.k., but having a harder time swimming this year due to not being able to hold her breath under water as long.  I'm nervous about what her PFT's might show.

Riley "graduated" from Montessori a week ago.  The school goes through 6th grade and she just completed 5th, BUT we are moving!!!  August 1st we will move approximately 1/2 mile north of where we are into a house :-) and it puts us in the Harlem school district.  While we love Maria Montessori, we are not thrilled at all with what the district has to offer for middle and high school.  It was a tough decision, but one that had to be made and the timing is right for us.  We were going to try to live in our apartment the whole time Scott was in nursing school, but we are just too cramped...add that on to Scott working nights and sleeping during the day...not good.  We found a brand-new house (its just the foundation right now) in a nice size subdivision to rent.  If we like living there then we'll eventually buy it.  So, if anyone is available Sunday, July 31st we'll be loading up the truck then.  And, if you happen to have Monday, August 1st off, we could use some muscle that day, too.  (wink, wink)

The girls had their last 1 hr and 45 min of school today.  I got a lot of great pictures.  They both had EXCELLENT report cards so we spent the afternoon swimming at Sand Park Pool.


Last Friday we were invited as a Make-A-Wish family to the Rockford Airshow to watch the planes practice.  Very cool!  They showered the big girls (we left Avery with Grammie & Poppy) with tons of goodies!  They treated Shelby like royalty!  It was a lot of fun!

Enjoy the pics!  Hope and pray that I have good news to report tomorrow.

June

Stuff

Some "stuff" has been going on with Shelby, but so far nothing MAJOR.  I'll update more after her Pulmonologist testing and appointment this Wednesday.

No update = Good news

Sorry to be absent for so long, dear readers, but things have been busy and not too bad around here.  Shelby's birthday was great and she is officially 9 now :-)  We also had Avery's birthday.  Four!!!!  Didn't I just have her?!?!?

Shelby's ammonia level was high (just above 100) when we were in clinic mid-March.  She has been started on Lactulose to help bring it down and as of last week's labs it was in the normal range.  Her wbc & platelets, though, still sucked.  A little less than 2 months will be 6 months since her shunt surgery and while her incision is healing beautifully, her numbers should be better than that.  The surgeon said the spleen did a really good job of being bad and it will take a while for it to correct, but its getting down to crunch time.  I have no idea what will happen if we hit that 6-month mark and have no change in her numbers....and really, right now, I don't want to know.  One day at a time.  And today is good.

April 1st my friend Michelle passed away at the age of 33 from colon cancer.  Not only did I grow up with her and her brother, Nick, but Nick's daughter and Shelby are best buddies.  Very sad.  Then the next week, I got an e-mail from my friend, Karin, who is in her early 40's.  Her mother just passed away last month from breast cancer and Karin was diagnosed with colon cancer.  Thank God the cancer has not spread, but she is in for a really tough treatment.  Please pray for her and her 3 boys.

Today we celebrate Scott's 44th birthday.  I'm glad he has the chance to sleep in today - his college is closed today - he really needs it.  He is working his butt off and I am so proud of him!  He keeps getting the top test scores in his classes!  He will be a GREAT nurse!

Well, that's all for now.  Enjoy the pictures.  The girls are growing so fast.  Riley is only a few inches shorter than me and we wear the same size shoe now.  She's not a little girl any more :-(

As we wait patiently for Mother Nature to warm up the outside, may our hearts be blessed knowing of the promise of new life in Jesus Christ!  Happy Easter!

Spring 2011 update