Sunday, May 27, 2012

Puppy!!!!!!!!

Yesterday Shelby's puppy wait came to an end when she picked out this little guy. This is Benny, a 9-week old, 4 lb. shih poo (shih tzu, poodle mix). Yes, she waited a long time for her liver, but waited even longer for her own pup. I am SO happy for her!

Thursday, May 24, 2012

Clinic Day

10:17 p.m.
Made it through the rest of the day!  Infusion went fine.  Met with the pulmonologist.  He agrees with us (thank goodness) that Shelby's sats should be kept at 88%+ rather than 80%+  She really struggles to breathe when she's in the low 80's.  It makes no sense to deny her O2 because then her body uses all its energy to work on her breathing rather than healing from surgery.  So, we are to titrate her O2 as needed up to 6L.  We think this will allow her to do more physically as it will reduce her running out of breath.

She got hungry during the end of her IV infusion and wanted french fries...and ate them all.  Baby steps, but we'll take them.  

I'm so tired.  We have clinic again next week in the new hospital.  :-)  Happy 5 weeks together Shelby and your "new" liver!

12:57 p.m.
In day hospital. She'll get her 2-hour IV infusion of pentamidine, an antibiotic to help prevent PCP pneumonia. She can't take the antibiotic they normally give so she has to have this. Liver stuff looked good. Some labs bumped up ever so slightly. Not a worry for one time. If they're like that again next week they'll have to investigate a bit. They suggested we stop giving her the pediasure for 2-3 days to see if her appetite comes back.

9:00 a.m.
Labs now. Busy day full of check ups ahead...PFT's, liver clinic, IV infusion & then pulmonology clinic. Please pray all looks good.

Monday, May 21, 2012

Taking a break

Please know that if I don't post all is well.  We are all just getting *reacquainted* living together under one roof and trying to establish some "normalcy."   Liver family, please know that I'm taking a break, too, for a while and riding the train of good labs/Shelby doing well.  I'll be back, I will.  I've been offered too much support over the years to step completely away, but right now, while I don't have any questions for you experts, I'm going to focus on this "new" life.  Besides, I have to get my butt in gear getting the house ready for this puppy which will probably be picked out/brought home this weekend :-O  Almost 7 weeks of living in Chicago takes a while to unpack, put away, sort through, etc.  You understand.  Thanks.

Saturday, May 19, 2012

Phew!

Been busy.  Its been good.  We made it home Thursday evening to a BIG surprise "Welcome Home" for Shelby.  Then we had Scott's pinning ceremony and graduation on Friday.  Pics to come soon...once I get them all on here :-)  We're doing good, really good :-)  Thank you donor.  Thank you.

Thursday, May 17, 2012

Tuesday, May 15, 2012

:-) ....mum's the word

After even a worse night of sleep for both of us, I was greeted with a wonderful phone call just before 8 a.m.  The nurse was calling us to say that Dr. Alonso is o.k. with Shelby going home after clinic Thursday if her liver numbers look good.  PLEASE do not say anything to Riley or Avery.  We're not telling Shelby, either, because if her labs come back bad she will be crushed.  I want to surprise my girls.  If you're on Facebook, look for an event invite if you're local :-)   Pray, pray, pray for good numbers Thursday morning!

We are very excited that we'll see Scott soon!  He's still taking his final, but we should have him here with us by mid-afternoon.  Then its off to the Lincoln Park Zoo on this beautiful day.  :-)

Monday, May 14, 2012

Fab Labs

Shelby's labs today were fabulous!  And her prograf level was within range :-)  That was about the only good, but its a BIG good.

We both - the past week its just been Shelby - slept horrible last night.  Shelby woke several times for the reassurance that I was right there.  Added to that was her 1 a.m. dose of methodone (last one at that time :-) and then there were my nightmares (Shelby going back on the vent, but she was sitting there talking...yeah, its starting to bite me.  The social worker says that's a *good* sign that my body and brain are starting to relax and process all this.  I love her to death, so I'll take her word on it.) and my aching back.  Loooonnnnggggg night and then early waking for labs this morning.  Ugh.  It all came to a head this afternoon when Shelby whined/cried through half of her tutoring session and I said "NAP" ... and we did for an hour-and-a-half.  I woke up and freaked out thinking we had slept until the morning and how was I going to explain to the nurse that only 1 week in my care only and I had missed a dose of Shelby's Prograf.  Then my brain got straightened around and I realized it wasn't the next day.  Sigh....

Scott takes his final tomorrow morning and then will head in for 24 hours with us before heading home for Riley's spring concert (She has a solo :-)  We are anxiously awaiting his arrival.


I sent the nurses an e-mail last Friday asking them to advocate for us with the doctors in sending us home.  Shelby is NOT liking it here.  She is SO homesick.  We've been here for over 6 weeks now so I can't blame her at all.  This weekend, with all our visitors, she was "Shelby."  She's back to not being "Shelby" now.  I just really feel that she will push herself more and just do overall better recovering at home.  I pray that they decide in Thursday's clinic (if her #'s look good) to give us the green light to head out.  We'll still have to come back twice a week for a while; maybe even more, but I'll do it if that what it takes to help my kid.  Sleeping in our own home will do wonders for all 5 of us.  Please pray her numbers stay stable and they let us go HOME.

Sunday, May 13, 2012

Weekend visitors

My Mom's cousin, Lori, and her daughter, Kaylin.  They came to Chicago to participate in the Run/Walk from the old hospital to the new one then came and visited along with Kaylin's boyfriend, Sam, at Kohl's House.

Kaylin's sorority gave Shelby a BIG gift bag which included puffy and crunchy cheetos.

Looking at one of the books in her gift bag.

Loving her new dog book!

All her loot :-)

William and Katie loved hanging out in the "little" room.

Cousins in the little room.

Avery and Shelby being sisters this morning

On our walk today.


Picture of the "old" hospital.

We were SO blessed with visitors this weekend:  My parents, Bruce and Lori, Chris, Heather, William and Katie, Lori, Kaylin and Sam, and Scott, Riley and Avery.  It REALLY helped Shelby's spirits...mine, too.  We're exhausted, though.  She has labs in the morning.  Pray they're good please!!!

Friday, May 11, 2012

Visitors

11:37 p.m.
Guess what?  We had visitors today!  First my parents came in.  It was really awesome that they got to spend time with *just* Shelby as Riley was at school and Avery was home with Scott.  Lots of Grammie and Poppy lovin' was soaked up by my girl.  She ate some Subway that my Mom and I ran out and picked up and went for a nice, long walk/wheelchair ride :-)  She was not happy at all that they had to leave so they stayed until Uncle Bruce and Aunt Lori arrived.  That made it a bit easier on her.  Dad took the pictures from their visit so I don't have those yet, but I snapped a few when Bruce and Lori were here.  Clearly you can see why Shelby adores them!
Uncle Bruce making his "serious" face for the serious (as opposed to goofy) picture!

Who would not love an aunt and uncle like this?!?!?  I actually saw *MY* Shelby back for a while.  It was so nice...

Shelby showing them her Nintendogs game.

Uncle Bruce and Shelby playing Xbox while Aunt Lori was feeding her broccoli and popcorn.  Shelby had it made!
Tomorrow Uncle Chris, Aunt Heather, William and Katie come and then Scott, Riley and Avery will be here and spend the night.  Can't wait :D

Thursday, May 10, 2012

1st (of many) "liver" clinics

5:58 p.m.
Clinic went great!  Shelby probably wouldn't say so because she got her staples removed (43 total, I think), but I know her incision is feeling better with them out.  They (and me) are thrilled with her numbers; they really are fabulous.  For my LF/medical peeps:  Albumin 3.6, T. bili 1.0, D. bili .2, Alk Phos 116, ALT 35, AST 18, GGT 75, PT 13.3, PTT 26.0, INR .96, BUN 13, Creat .43, Hgb 12.6, Hct 38.2 and platelets...212 :-O WOW!  Her Prograf target range is 10-12 and it came back at 7.2, so instead of 3 mg BID, she'll take 3 mg in the a.m. and 3.5 in the p.m.  Monday she'll have labs again.  Her Methadone and Ativan weans were slowed down.  We celebrated with an ice cream cone and a nice, long 3-hour nap :-)


While everyone is thrilled with her progress, she is far from *our* Shelby.  She still has a long road ahead of her, but has already come leaps and bounds from getting extubated and not being able to raise her arm off the bed.  She does NOT have her spark, her spunk.  A lot of that is masked by meds for now and the fact that the largest organ in her body was removed and replaced with someone else's.  It can take up to 6 months to see *our* girl back.  She can only handle so much activity right now and easily becomes overwhelmed.  She is very emotional and I know that frustrates her.  As long as her liver numbers continue to do well the meds that contribute to all this will be weaned, but it will still be quite a while.  By weaned, I mean within the first year post-transplant.  Also, a lot of this will just take time.  She's a bright, vivacious 10-year-old that has just had the wind knocked out of her sails and knows all too well what is going on around her.  Parenting her right now is tough.  I want to trade places with her, but I know that is impossible.  Huge doses of patience are required.  Believe-it-or-not, I have that.  While I miss Riley and Avery terribly, I just don't know how I would devote the attention Shelby needs for her healing if I had them to take care of now, too.  I feel SO guilty for saying that...but, that's how it is now.

9:07 a.m.
Up too bright and early for what we just went through last night.  Labs done.  In a room waiting to see the "team."  Clinic is usually long...that's the word on the street.   Will update later....

Wednesday, May 09, 2012

ED. :-(

1:43 a.m.
All looks good with new liver, thank God!   It was *just* pain.  She just switched from her methadone every 8 hours to every 12 and had PT this morning.  Too much at once for her.  We're heading back to Kohl's for 5 hours of sleep before we have to wake up and be back here for her Prograf level (labs) and clinic all morning :-(  Sleep is for sissies, I guess :~<

12:16 a.m.
Ultrasound done, IV in and labs drawn.  She'll probably have a chest and abdominal X-ray, too.  Wishing I didn't have a caffeine FREE diet coke with supper.  Praying it is *just* too fast of a pain med wean and nothing else.

10:00 p.m.
Tummy pain - most likely incisional - has really been bad this afternoon/evening so Dr. told us to come to the emergency department to get checked out.  Shelby is so NOT thrilled, but threw on one of her Funny Bones medals to come here.  Waiting in a consult room for a "real" room to open up.  Sigh....

Tuesday, May 08, 2012

Day #19 post-op

8:44 p.m.
Some of our fabulous 6W nurses!

Goofy faces!

Waiting for Funny Bones to start in the Brown Family Life Center

Shelby and the beloved volunteer, Ted :-)

The crew at Brown Family Life Center last night.

The goofy pic!

Shelby and Julia, our favorite Funny Bones person and our friend.

The new meds


9:18 a.m.
Night went great!  Shelby fell asleep in, like, 30 seconds.  Scott and I shared a twin bed for half the night, then I crawled in Shelby's twin bed and snuggled up to her.  She really wanted her Daddy to stay the night so instead of driving home last night for today's 9 a.m. class, he slept here and got up and drove home at 6 a.m.  Thank you honey!  I woke to my 1 a.m. alarm - this is an amazing feat if you know me and alarm clocks! - to give her her methadone.  Now, the 9 a.m. meds have been given - one of the two *big* doses for the day - and we're both chillin' in bed :D  For my liver/medical people, her labs yesterday were awesome!  I was going to get a copy and forgot so I'll have to remember that in clinic Thursday morning.   Her prograf level did come back at 18.5 (her target range right now is 10-12) so last night and this morning's doses are being held and she'll resume it this evening at 3 mg bid.  My goal for the next few hours is to get both of us cleaned up and to take her for a "walk" (wheelchair ride, really) outside. 

Monday, May 07, 2012

Day #18 post-op

6:14 p.m.
Why have I not posted sooner today?  Its because we've been busy getting everything ready to take Shelby to KOHL'S HOUSE!!!!!!  Getting all our stuff from the hospital room settled with the stuff we already had in our Kohl's room, getting O2 delivered, getting her PICC line out, dressing changed (by the way, her incision looks FABULOUS), talking with the transplant pharmacist and nurse practitioner all took ALL day.  She's eating some supper and then we're heading to Brown Family Life center to see Funny Bones perform :D  Yay! 

Sunday, May 06, 2012

Day #17 post-op

Shelby and the Rainbow Dog, Louise.

9:45 p.m.
Good day.  She rode in the wheelchair halfway to the Brown Family Life Center and walked the rest of the way.  She sat on the couch there the whole time.  She did really great, but was over-tired by the time we got back to her room.  Finally she took a 2-hour nap and was much better afterwards.  She got a bath this evening and ate some pizza with us.  She's lookin' good.  Still very weak compared to pre-transplant, but improving each day.  We pray that she gets discharged to Kohl's House tomorrow.  We'll see what they say during rounds, but it may also depend on how her labs come back in the morning.  We'll also have to have home health (Apria, I'm sure...grrrr) set up before she can leave for her oxygen.  Dr. W had *grand* plans of her leaving on no O2, but that's not happening.  We've used 3L when she's "active," and 2L otherwise.  Of course, that still puts her sats only in the mid 80's-low 90's.  I did go to Target today to get groceries for living at Kohl's House.  So, we're getting ready.  Let's hope we can get our girl over there soon. :-) Scott needs to head back home for classes and tests Tues-Thurs so I'm really hoping he can help me move her out of the hospital tomorrow.
Me and my girl!


Saturday, May 05, 2012

Day #16 post-op

9:49 p.m.
Another good day.  She was very busy playing computer and her nintendo and alternated her awake time between the bed and the chair.  She (and me) finally took a snooze around 6 p.m. and is now awake after taking her 9 p.m. meds and taking a few laps around the floor.  Hopefully we can get her back down soon.  She ate pretty good today; more than yesterday, but not quite "meals" yet.  Here's for a good night.  She (and me) is excited about going to see the Rainbow (therapy) Dogs tomorrow morning in the Brown Family Life Center :D  Its been since January that she's been able to go there.  Very exciting.  

***If you leave a comment please do not just leave it anonymously.  Please sign your name.  We read these to Shelby and she likes to know who they're from.  Thanks!***

10:54 a.m.
My sweet man drove back in last night after COMPLETING his clinicals and taking a make-up test.  He stayed with *super-girl* so I could sleep at Kohl's House.  Ah...sleep, wonderful sleep.  I got about 11 hours!!!  I talked to him on the phone this morning and Shelby's night went well.  Without her ng tube she had to be awakened at midnight and 3 a.m. to take her methadone and ativan.  She did great!  When we spoke she had already been up to the bathroom, taken all her 9 a.m. meds (one of the 2 "big" doses for the day) and ordered breakfast.

She is going home on 25 doses of 8 meds a day.  She came in on 31 doses of 16 meds a day!  Pre-transplant her meds were spread out to 5 times a day we had to give them.  Now, the majority are given at 9 a.m. and 9 p.m. and the in-between are just 2 doses of nystatin.  It is SO much simpler now!  It seems like less doses of meds than it is because her prograf (main anti-rejection med) is 3 capsules each dose, but they're so stinkin' tiny...seriously!  I've never seen such small capsules.  I think we're in the minority being thrilled on how *few* meds she's on; the majority is usually overwhelmed at how many meds you go home on.  We feel thrilled that she is *only* on the meds she's on.  

Scott just called and reported that she ate a go-gurt and a breakfast bar and then saw his McDonald's and wanted some.  As we spoke she was digging in to her hash brown and apple pie :D

Friday, May 04, 2012

Day #15 post-op

6:12 p.m.
Great day!  Mom, Dad and the girls visited :D :-) :D Shelby did pretty good with all the excitement.  She's down to 2L of O2 and there is talk of discharging us to Kohl's House on Monday.  Dr. Whitington pulled out her NG tube.  Scott is on his way back in to spend the weekend with us and hopefully help us move over to Kohl's House.  That's all for now..I'm very tired after today's activity...

Thursday, May 03, 2012

Day #14 post-op

9:23 p.m.
So, now she's eaten 4 popsicles, cheetos and half a McFlurry! She's taken 2 walks around the floor and done VERY well on both of them!!!  She had a 2-hour nap this afternoon, but otherwise her sedation levels are low enough that she isn't dozing off mid-sentence.  This is exciting!  Her prograf level adjusted nicely to holding the 2 doses.  She is still getting full feeds for 12 hours overnight, but maybe they'll cut back or drop those when they hear she's eaten today.  We shall see...enjoy the pics!
Getting set to do PT this morning.

Eating an ice cream cone!

Up for her 1st walk!!!!  Yes, she looks not-so-happy in this pic, but she was doing really good.

Look how she's sitting up and not laying back on the bed or using the pillows to hold her up :-)


2:44 p.m.
I'm sorry.  You, dear readers, are probably going through withdrawal.  Hope its not as bad as Shelby's was :-O  This is a good thing that I haven't been able to post yet today.  Scott had to go back home yesterday to work on finishing up school - he graduates in 15 days :-) :-) :-) - so I'm flying solo.  PT and OT and Snow City Arts and the social worker and the tutors and volunteers, all come in to see her/work with her, but she still likes her Mama around.  She has sat up in the chair about 3 times today (once for almost 45 minutes), the feeds are working their way through her system (yippee) and....she asked for ice cream AND ate it!!!!  She had a drumstick and a sundae.  SO HAPPY!  Her sats rock (you know, except for that whole when-she-moves thing).  They were 91-96% last night and right now they are 94%.  Her prograf level came back high (17 - her target range right now is 10-12) so they held last night's and this morning's doses, but Dr. Whitington said no matter what her level comes back as, resume her dose tonight at 3 mg not 4.  No problem.  This is how things go.  In a few minutes I'm making her rest because she has been going pretty strong so she needs to get herself ready to go for a walk later :-)  I'll try to post pics of it.

Wednesday, May 02, 2012

Day #13 post-op

10:04 p.m.

Shelby's WONDERFUL nurse, Meghan, drew this.  She was working the day Shelby was prepping for transplant.  Meghan had a great talk with Shelby explaining about how things would be after transplant.  Meghan said when things were tough she was going to say/remind Shelby "Eye on the Prize" so Shelby would focus on getting better and getting her puppy.  The day after she was extubated Meghan worked and the first thing Shelby said in her little whisper of a voice was "Eye on the Prize."  How awesome!  Meghan, Suzy and many other nurses made our PICU experience really great.

Load #2 heading up to 6W.
The view from Shelby's "new" room.  It is beautiful tonight with all the city's lights.


Happy girl on the 6th floor :-)


5:22 p.m.
OMG!!!!!!!  I'm packing up our PICU room to move to 6W!!!!!!!!!!!!!!!!!!!!!

12:26 p.m.
All this sitting up and looking cute...

 can make you pretty darn tired.  So proud of my girl! She's on the "regular" O2 on 5L - no high-flow.  Her sats are in the mid-high 80's but they'll take it.  She's not blue/purple or struggling to breath.  It will just be that way for quite a while.  As long as nothing else "pops" up and she tolerates the 5L well, she'll most likely move to the floor tomorrow :-)


9:28 a.m.
Night went great!  They did a fast wean on her O2 and had her down to 4L when I walked in the this morning.  The *anxiety* of getting her jp drain pulled (yes, this morning :-) bumped her back to 5L.  She's holding steady in the upper 80's right now which everyone is o.k. with.  As I type, she is eating popcorn.  I don't think it will be that much, but I'm thrilled she asked for it.  Its also good OT (occupational therapy) for her to grab the popcorn and get it up to her mouth.  Yes, she is that weak that that is a BIG accomplishment right now.  Here's praying for more eating, more movement and rest today so that she can continue to heal.  Maybe she can try to walk tomorrow?  We shall see....

Tuesday, May 01, 2012

Day #12 post-op

6:34 p.m.
Good, busy day.  Foley came out.  Surgeons haven't been back to pull the jp drain, though :-(  Shelby sat up in a chair for about 30 minutes :-)  Scott and I were educated by the liver APN's and the pharmacist on Shelby's meds and on going home.  No, its not happening soon, but it is encouraging that her biggest holdup is her O2.  They got her down to 6L last night, but she kept desatting into the mid-80's so they had to bump her back up to 8L.  That's o.k.  We already know that it will take months for her lungs to heal.  The goal is to get her down to 4L so she can go home on "regular" O2, not high-flow.  We're still trying to get her to eat more so she can get her NG tube out, but that's not looking the greatest.  Please send hunger vibes Shelby's way :-)  Thanks!
Lisa and Aiden - like her neck pillow?  :-)

9:33 a.m.
She had a good night.  I slept here with her and Scott slept at Kohl's House.  She's very sleepy still from her meds.  They're talking about weaning them more.  They're also talking of removing her last jp and her foley.  All those things should hopefully make her feel more like moving.  Its like she's drunk now.  When they do rounds, they will finalize all that.  I'll update after.