Inpatient

After having to keep Shelby on 6L of O2 more and more (7 continuous hours yesterday), Scott and I made the decision to bring her in to Children's to be admitted.  AMAZINGLY her sats were great today!  We still brought her in but were amazed at how stable she was.  In fact, they thought they were going to have to admit her to the PICU, but the doctor from there came down to take a look at her and said "No way."  6W was a little hesitant to take her, but luckily they are very familiar with her so they did.  Amazingly (yes, I am going to continue to use that word) she is satting well on only 4L here!!!!  What?!?!  We are going to call our home health care company first thing Monday morning and have them come check the new equipment they brought out last week.  We just have a feeling that maybe she was getting air, but not enough O2.  There is nothing else to explain this "improvement."  We are staying inpatient, though.  My nerves are pretty frayed from so much desatting and O2 monitor watching last week and the length (almost 7 months) of this "haul" that this should help give Shelby "new" walls to look at (not really; its the same room she had before!), new faces to see everyday and me a little break from being "Nurse Mom."  Hopefully on Monday UNOS will approve her 40 and then we continue to wait for a liver, but let's hope/pray/cross our fingers it won't be long at all.

Letter submitted

10:22 a.m.
I just talked to one of the organ procurement coordinators at Children's.  The letter to UNOS to up her PELD to 40 was submitted this morning.  Getting a response from all the needed people (surgeons in our region) is probably NOT going to happen on a Friday.  Let's all pray that it does.  She's been coming up as #3 for liver offers this past week.  Her name is finally popping up for offers.  This is a good sign.  C'mon liver! 

Update

Check out this fabulous article on Shelby's awesome classmates at Ralston!   Way to go Mrs. Messner's class for organizing this fundraiser and way to go Roadrunners on supporting this SO much!  Shelby only attended school there from August - November, but she sure made some great friends.  We cannot wait for her to go back.  Unfortunately, at this rate, she will probably not get medical clearance (even if the transplant were to happen today) to re-join her class this school year.  She will have to wait until she's in 5th grade :-( 


There are many upcoming fundraisers.  Watch here closely for them.


Shelby's O2 level really stinks.  Monday home health delivered a concentrator that goes up to 10 liters; our other one only went to 5L.  Her pulmonologist said the highest he wants her on here at home is 6L.  If we are running it at 6L, then she needs to be admitted.  That is, 6L to keep her sats at a minimum of 92%.  Guess what?  We're running her at 5.5-6L!  I put in a call to all the nurses today saying we're not continuously at 6L, but it is sure hard to have her in just the right position, doing hardly anything, breathing just right (with her mouth closed) to maintain her at 92%.  When she's sleeping we can turn her down to 5L and she sats 95%+.  She has good spurts of her sats staying good and then bad ones.  (I am only referring to her sats while she's in bed or sitting on the couch.  We won't even look at the low 70's she dips to using the bathroom.  Ugh.)  So...I won't be surprised if I get a call in a bit saying they want her admitted.  We're torn.  Being home is very nice.  Hard, hard work, but nice to wake up to your 4-year-old about 3 inches from your face.  Nice to see your beautiful tree in bloom.  To see the neighbors, to walk around your block, sit on your couch, etc.  To wait here.  BUT, it may not be the best for Shelby's health at this point.  While nothing is acutely wrong (thank God!) she is sliding downhill.  Her sats only stay good if she is laying in bed, basically doing nothing.  Not good.

My heart was totally broken this morning.  Avery was just having a rough time.  Mad at Mommy for saying she needed to wear long pants today, you know, "normal" 4-year-old stuff.  But, Daddy's tickle finger was not bringing her out of her funk.  So I scooped her up and we went to my room and I asked her if not being able to play with Shelby was making her sad.  And the tears came.  And came. Poor thing.  We had a "good" cry together.  She just wants "her" Shelby back.  The one that would play outside with her.  HER Shelby.  She misses her so.  She just wants her sister to feel better.  Me, too, baby.  Me, too.  


(By the way, potential donor #5 is getting worked up today at Northwestern.  Let's pray for quick results.)

3:25 p.m. 
Got word from one of the nurses that we can stay home until she needs 6L continuously for 1/2 a day.  Also, Dr. Alonso is writing another letter tonight to UNOS to ask that her PELD be moved up to a 40.  If they get denied that, then they'll turn around right away and ask for a 38.  The surgeons are watching closely for our person being worked up today's results.

Birthday pics

The cards - THANK YOU ALL WHO SENT THEM - how awesome!!!  I haven't done a count yet; anyone care to guess???

More decorations

10 balloons for our 10-year-old girl!

Sister love!  Shelby patiently waiting for us to come and move all her O2 equipment out to the living room where Avery reported "I see presents!"

Showing off one of her presents.

And another.

And another.

And another.  Hey, when you need a liver transplant, you're Mom kinda buys you a lot.

Love how she's peeking through the balloons that Avery moved all around her.

The Ratzlaff kiddos.

Love the shirt, Tom!

Shelby with her huge smiley cookies from the Ratzlaff's.

Shelby resting on Adele's shoulder.  So sweet!

Opening birthday mail.

Chops holding "the day's stack."

Chops, Shelby and Avery.

1/2 of the Barkley family came to visit :-)

Pastor Laura and Shelby coloring.

Makayla and Avery (dressed up in some strange costume).

Gracie and Riley

Courtney (Mama L's daughter), Shelby and Mrs. Lundgren ("Mama L")

Kate and Shelby

BFF's

Nephew, William.  He turned 6 the day before.

William and his present from us.

Sweet niece, Katie.

Lorraina and Shelby.

In 39 minutes...

it will be Shelby's 10th birthday.  Wow.  I wish for so much more for her than things are now.  I hope she wakes up and enjoys every minute of tomorrow, but I also know it is not how she imagined spending her 10th birthday.  Will post pics of her day.

Home...the rollercoaster ride continues

Late yesterday afternoon the doctors decided to discharge Shelby.  They admitted us thinking her sats were doing something that they're not; there was mega miscommunication :-(  It is very unfortunate that it happened, especially since Shelby really likes the hospital.  She was very sad to come home.  But, good that did come from it was that we let the doctors know how we would like more support from them in expediting our potential living donors with the testing and getting results process.  They admitted that this is taking too long; that you usually don't have to go through so many people to find a match.  Our next person will be #5 to be tested.  The plan is for the head liver doctor at Children's to call Northwestern first thing Monday morning and put the pressure on them to get things rolling.  The testing will probably still only happen on Thursday.  They only do it on other days if the person needing the organ has 24-48 hours to live.  We don't want to be in that situation.

I also initiated the process on Thursday to get Shelby listed in St. Louis.  Scott and I need to talk this weekend and see if we are going to proceed with that.  Monday morning the nurse will call me and make arrangements for us to come down there and go through the transplant evaluation.  That will be a 2-day process and they would admit Shelby to the hospital there for it.  It is normally outpatient, but with Shelby's oxygen needs, it would be easier on all of us if she's admitted.  We cannot take that much oxygen with us.  Using the hospital's is the easiest way to do this.  As it is for the drive down and back we'll need to take at least 8 large O2 tanks with us.  We hate the thought of going to another center when Children's has been taking care of Shelby for almost a decade, but we also cannot let our daughter not get a liver.

Thank you all who have sent cards already.  I'll try to get the picture of them on our living room wall uploaded later.  Please, keep the prayers coming.  Keep spreading the word of the need for organ donors.  Make sure you are an organ donor.  Thank you.

1:58 p.m.

So Dr. W came in during rounds and said he was going to push some buttons downtown (NMH) to get our donor's results and then walked out saying he was going to go make phone calls. Just found out that our person to be tested yesterday, Tim Moore, is not a match. THANK YOU, THANK YOU, THANK YOU, Tim, for trying. It really means a ton to us!

So...we have 2 women's applications on file and our 2 "Good Samaritan" men are only 18 days into their 30-day waiting period. We still need men (blood type A or O, generally in good health and under the age of 55) - that we know (if we don't know you, then there is a 30-day wait) - to be tested. If you feel so moved, please go to the February 16th entry on my blog. You will find all the information you need there. Thank you.

not THE CALL

12:24 a.m.
So the ER doctor determined Shelby should go to the floor.  When we questioned it, Dr. Alonso was called.  Scott spoke to her and it turns out she was relayed wrong information.  She was told that Shelby was desatting and not recovering.  That is not true.  I told the nurse that she was desatting more and more and lower when she did, but I never did say that she didn't recover.  Duh.  If she was that bad we would have brought her back in on our own; not waited for a doctor to tell us to do that.  So we feel like this admit is a total waste of time.  They are not doing anything here that we can't do at home.  We thought the PICU admit would help get quicker results on our donor tested today at Northwestern.  Nope.  We thought it would get her more points.  Nope.  Nothing's going to change.  We are pretty disgusted.  We'll most likely be traveling to St. Louis, MO this week to have her evaluated for transplant there.  They have a great program and are in a different UNOS region.  We hate the thought of not being at Children's, but the more and more this "miscommunication" happens, the less faith we have in them here.

8:35 p.m.

but we're in Chicago because Shelby's doctor wants her admitted to the PICU. I *candidly* shared our concerns to Chicago about Shelby deteriorating in not only her sats, but also her endurance to sit up and bathe/shower. I also initiated the process today of getting Shelby double-listed; that is, listed at another center in another UNOS region, therefore increasing the area that deceased donors would come from.  All that got everyone hopping at Children's.  Her doctor feels that if we go to St. Louis for an evaluation (which they wanted to see her next week for), they would admit her because of her horrible oxygen levels.  She wanted her admitted here so she can see if she can ask for yet another higher PELD for Shelby.  She also felt is was not right for us to be doing so much care for Shelby and having that stress.  We did pretty darn good keeping her at home as long as we have.  When you have a kid that needs to come be admitted to the PICU, you've had you're hands full at home...trust me.  Also, today we had our 4th person tested to be Shelby's living donor.  Maybe, just maybe, by Shelby being here that will make Northwestern speed up the test result process.  You can't do a direct admit to the PICU like you can to the floor so we are here in the ER.  We had to wait only a very short time before they put us in a consult room so we didn't have to sit out there amongst all the other sick kids.  I didn't have to ask - impressive!  Scott is over at Kohl's House unloading ALL our stuff.  Now we wait for the ER docs to look her over so she can go up to the PICU.

Is it a home or a hospital?

Friday we broke the bed rest rules and took Shelby to see a bunch of puppies.  We went to a breeder's about 45 minutes from home.  Shelby has been watching their website very closely and I'm sure Santa will get her her puppy from there.  We just went to visit as she can't pick out her puppy just yet.  I have to admit, it was SO much fun!  Scott was able to go with so it was a nice Daddy, Mommy and Shelby outing.  Scott was pretty busy with the oxygen and silencing Shelby's oximeter because it was alarming a lot with all her excitement.  We had her at 5 liters the whole time we were there.  Enjoy the pics!  Sorry so many are blurry; excited people and busy puppies are hard to catch on our camera.  I cannot wait until Shelby can get her own.  C'mon transplant!

Shelby's favorite.  A little Maltipoo (Malteese and Poodle)

Later that day, a *new* home health care company (this is the 3rd one we've dealt with since Shelby has been on O2) delivered an oxygen system that will deliver heated, humidified air to Shelby.  This should help her sore, raw nose a great deal.  BUT, the setup is something else.  Instead of "just" having a concentrator and oximeter to deal with there is now an additional (IV-like) pole that holds the heater and a compressor unit.  It also limits Shelby's movement, even in bed, a great deal :-(  She is not happy about it, but does like that her nose feels better.  Pretty much she's limited to her hospital bed as moving her to our bed or the couch is very difficult.  She has been down a bit with the nice weather and this new system.  Her sats consistently dropping into the low 70's when she gets up to use the bathroom.  This is the lowest they've ever been.  Please, please, please, she needs her *new* liver.

*Please see previous post - important info regarding Shelby's birthday*

***Please leave comments so we can read them or share them with Shelby if they are for her, BUT please remember to sign at least your first name so we have some clue who they are from.  Thanks! :-)

Two weeks from today...

is Shelby's 10th birthday!!!  As you can imagine, turning 10 should be filled with fun with friends and a party and lots of giggling and goofiness...but, that will not be for Shelby on March 21st.  We know she can have her *big* celebration later (MUCH later), but in the eyes of a girl who is almost 10 this is a BIG bummer.  So, I ask that everyone start to shower her with cards.  I am going to trust that this goes well posting our address out here on the web for a while.  Here goes....
Shelby Martin
10930 Norman Ave.
Machesney Park, IL  61115

Just an FYI - she LOVES anything dog...hint, hint.  There are LOTS of cards with dogs out there.  Ready, set, send! :-)


***Please leave comments so we can read them or share them with Shelby if they are for her, BUT please remember to sign at least your first name so we have some clue who they are from.  Thanks! :-)

Darn you, nice weather!

Shelby's nose is so sore.  The inside is so raw.  That will happen when you're on 4 liters of oxygen continuously for 100+ days.  There is a bubbler on the concentrator, we have a humidifier in our living room and she uses saline nasal spray and a water-based lubricant in her nose several times a day.  Despite all that, she gets nosebleeds at least twice a day.  Then the horrible scabs form, causing pain, then it bleeds...repeat this over and over.  The pulmonologist has ordered for her to have a heated bubbler.  This should help keep the moisture in her nose better.  I hope so.

Today we had wonderful warm, spring-like weather.  My Mom offered to take the girls for a walk this afternoon, of course, with Shelby in her wheelchair.  Shelby kept desatting from sitting up and talking so they had to cut the walk short.  Then Avery and Riley wanted to stay outside and draw with chalk on the driveway.  This crushed Shelby.  She wanted to be a part of what they were doing so bad.  This is the tough stuff.  The part that people don't necessarily think about when a person is enduring a long-term illness.  Poor kid.  In an effort to cheer her up, Scott hauled her concentrator over to my parent's house and she is sleeping there tonight.  Hopefully a change of scenery and some Grammie and Papa spoiling will help her spirits.  My sweet Shelby.  Your liver is coming, baby, I just know it is.  We all just have to hang in there.

***Please leave comments so we can read them or share them with Shelby if they are for her, BUT please remember to sign at least your first name so we have some clue who they are from.  Thanks! :-)