Friday, June 29, 2012

GREAT clinic!

Clinic Thursday went great!  Shelby's liver is VERY happy.  Her numbers were the best they've ever been post-transplant.  She goes back in 2 weeks.  Her prograf level came back even lower, so now she's back up to the dose that made it too high (there's no middle ground; its a 0.5 mg pill that we have to play with, that's it).  So instead of 3 mg in the a.m. and 3 mg in the p.m. she's back to 3 mg in the a.m. and 3.5 mg in the p.m.  Tuesday or Wednesday we'll have that level drawn again to see where its at.

The new Ronald McDonald House is beautiful.  Fabulous, really.  It would have been really nice to recover post-transplant there.  We rested very well last evening. 
The bathroom - very nice and BIG!

Not the "main" kitchen," but the one on our floor.  Each floor has a gorgeous HUGE kitchen like this.  This is only half of it.

Shelby LOVING the new TV's in "day" hospital.  They have internet, built-in games, movies, etc.  Pretty awesome.

Waiting for her IV to be put in.

This morning she had her pentamidine infusion.  All went well...for about an hour.  Then she broke out in hives around her IV :-(  The infusion was stopped immediately and she was given Benadryl.  Luckily the hives did not spread and after being checked by the doctor, we were released to go home.  They did give us a script for an Epi pen which we filled at the hospital's pharmacy.  She is doing fine, but this just adds yet *another* drug to her already long enough drug allergy list :-(  They are going to start her on Atovaquone next Friday.  Let's hope she does not react to this one.  Preventing PCP pneumonia is very important. 
Textbook case of hives.

Wednesday, June 27, 2012

Clinic tomorrow

We head off early tomorrow for clinic.  Her prograf (main immunosuppressant) level was high so she had that particular lab redrawn locally last Friday after a med dose adjustment.  Well, that came back too low!  We'll see how it is tomorrow.  We don't have any concerns; we think she is doing fabulous!  All the girls had colds last week which they so kindly :-( shared with me.  They are all doing well getting over them - even Shelby :-)  Scott, Shelby and I will be staying in Chicago overnight at the brand-spankin' new Ronald McDonald House because Friday morning she has to have her monthly Pentamidine infusion.  No more Kohl's House.  Very sad, but this place should be hotel-like nice. 

Rockin' a 2-piece!
My Grandma was up for a visit :D

Riley looking awesome at Camp Winnebago

Avery...let's see.  She was a "Super Hero Puppy Dog" that day.  Ok, Avery....

Bye, bye big backup O2 tank!

Goodbye noisy concentrator!!!!

Little Benny had his first trip to the groomer's.  He's a whopping 5 lbs. now.

Avery sitting on the edge of our new pool.

"What?!?!  Its not filled yet, Mom and Dad?"  C'mon!"  Shelby can't go to any public swimming pools yet and our girls are fish!  I found this great deal at Big Lots and we now have a pool.  Bring on the heat!

Friday, June 15, 2012

:-D Clinic

No clinic or labs for 2 weeks - YIPPEE!!!  She got the OK to do summer tutoring, go to a wedding and go to camp in August.  Awesome!!!   But, her IBS is really flaring up.  She has a lot of tummy pain.  We're working with her GI on getting her back on meds to help, but we can't get in to see him until June 25th...10 more days.  That's a lot of pain for my little girl :-(  She's taking anaspaz (hyoscyamine), but we've had to double the dose and she's still having pain.  Hopefully we can get on top of this soon.  She was on 5 meds for this pre-transplant, but was not put back on them because sometimes the body can "reset" itself after transplant and they were hoping that her IBS would go away...doesn't appear so.  Prayers, please, for a pain-free abdomen for my girl.

Thursday, June 14, 2012

Clinic today

5:15 a.m.
We'll be leaving soon to brave Chicago traffic for a *regular* clinic check-up.  Some of her IBS symptoms have been back, so let's hope that they haven't thrown off any numbers too much.  I'll try to update later, but we'll come home and then have Riley's camp program we'll see :-D

Friday, June 08, 2012

No more....

OXYGEN!!!!!!!  196 days of it continuously and, just like that, she's off it.  We had been *trialing* Shelby off it earlier in the week; mostly when it involved taking Benny out :-O  We would check her sats and they would be pretty decent (high 80's).  So, we kept extending the amount of time she was off the O2, but would put her back on after a while...until Wednesday evening rolled around and after about an hour or so we noticed she hadn't put her O2 back on after a "break."  We checked her sats - low 90's!  So we kept her off a bit longer and still good.  She went the whole night without it and her sats were in the mid-90's!!!!  So the next day we kept her off....and the rest is history :-)  By no means are her O2 saturation levels completely normal yet, but low 90's is FABULOUS!  During PT yesterday afternoon she stayed above 87%.  I haven't called home health and asked them to pick up her O2 and concentrator, but hopefully soon we will be confident that her lungs have healed enough that we don't need that stuff here at home.  Seven weeks post-transplant...on 10 liters of O2 pre-transplant...just came off the ventilator 6 weeks ago.  Amazing.  Shelby is thrilled that she is not tethered to her nasal cannula anymore and so are we. 

Friday, June 01, 2012

Clinic at the new hospital

Yesterday we ventured to downtown Chicago for clinic at the new hospital.  It doesn't open *officially* until June 9th, but some offices and clinics have moved there.  Shelby's check-up was quick and great!  She doesn't have to go back for 2 weeks.  Her labs looked fabulous!  She'll do labs again on Thursday here :-)  We couldn't be happier with her "new" liver.  We're all getting used to having a puppy around and trying to figure that out.  Today was Riley's last day of 6th grade - she is now a middle schooler :-( sniff, sniff.  Summer has officially begun here.  Its very chilly here today so hopefully the warm/hot weather will be back soon.