Thursday, December 30, 2010

Day #17 Post-Op

I am so giddy.  Yup.  Very excited.  Encouraged.

Shelby had labs run today.  Her white blood cell count is 3.6!!!!!  "Normal" is 4.0-12.0.  We used to be happy if hers was around 2.  3.6 is a BIG deal!  Also, her platelets are 102,000!!!!!  "Normal" for that is 130-400.  Hers usually ran in the 50,000-range.  Those are amazing numbers!  It looks like the shunt is already working!  Thank You God and Dr. Superina!

Shelby is doing quite well.  Amazingly well.  Last night she had a friend here for a sleep over - two weeks after major abdominal surgery.  I am so thrilled at how well she is recovering!  She does still tire easily.  Shopping at Wal-Mart today was too much for her so we put her in a wheel chair.  She is having back pain from compensating for her abdominal discomfort.  Her steri-strips are curling up and coming off nicely and it looks as if that incision is healing up just perfect.

Thank you, everyone, for continuing to check-up on her and pray for her.  Happy New Year!

Please click on this picture to see the entire album
Christmas 2010

Friday, December 24, 2010

Merry Christmas!

Wednesday, December 22, 2010

Fun AT HOME :-)

click on this picture to see entire album

Thinking back to this time last week gives me chills.  She was so sick on this day.  I asked her if she remembered that and she said "Yes."  I wish I could erase that from her memory; since I can't, I just pray that her memory of it is not as bad of a memory as mine is.  

She continues to amaze us with her recovery.  Unreal.  All last week seems like a bad dream...with a GREAT ending.

I wanted to make special mention of Scott.  He was such a rock for me and Shelby that week and continues to be for all of us.  Not only did he stay next to her bedside when things got rough and I needed to step out and prove to her that a J-tip was o.k. by letting the nurses do one on him, BUT he also managed to pull off these amazing grades during this extremely stressful semester.  I am so proud of you, Scott, and so thankful that you are my husband and the father of our daughters.  I love you!

Sunday, December 19, 2010


Too busy to update more than this.... :-)

Click on picture to see entire album

Saturday, December 18, 2010

We are on our way home!

Day #5 Post-Op

12:24 p.m.
I know Avery isn't looking, but the point of this picture is that all my girls are in ONE place.  HAPPY, HAPPY MOMMY!  Shelby is still doing fabulous!  She only has her central line in; the other 2 IV's were removed this morning.  We are waiting for the surgical team to make a decision on when she can leave.  She may need an ultrasound before she leaves, but otherwise there is no other reason for her being here.   She is eating, has minimal pain, is peeing/pooping good, her oxygen is good, she is getting all oral meds.  We are just in a holding pattern.  It would be WONDERFUL if they're going to discharge her, that they do it before Scott, Riley, Avery and Mom have to head home for Scott to work tonight otherwise Shelby and I are stuck here in Chicago until Monday.  Have a GREAT day! :-)

Friday, December 17, 2010

Day #4 Post-Op

4:20 p.m.  
Well, I've been trying to update all day, but someone (wink, wink Shelby) has kept me on my toes - in a good way.  Food, not hooked up to any IV's, taking long walks, O2 sats staying stable...its all good.  Shelby is AMAZING!  Dr. Superina came in today and said she looks great and could maybe go home....drum roll please.....TOMORROW!!!!!!!!!!!!!  We are still in the ICU only because there is not room on the floors.  Also, she is still neutropenic - this surgery takes a while to start working - so she needs a single room.  She may actually get discharged from the ICU!  

I am so excited because it shouldn't be much longer before my Riley and Avery arrive. :-) :-) :-) 

Lack of updates at this point means all is well, but I love to share her good news to her faithful prayer warriors so I will as often as I can.  

Surgery 6

I would like to ask a special request that you pray for Emerson.  You can access her blog in the right-hand column.  She is very sick right now.  Thank you.

Thursday, December 16, 2010

Day #3 Post-Op

4:51 p.m.

I think this picture says it all on how AMAZING today is going.  Thank you God!

No more NG tube, no more foley catheter, eating ice chips and popsicles, drinking water, on only 1 Liter of oxygen, she's moving herself around great, has hardly hit her pain button, and, she'll hate me for writing this, but she pooped :-)  Wonderful!  We're just waiting for a room on the floor to open up and then will bid goodbye to the ICU.

I went over to the Ronald McDonald house to shower and ended up taking a 2-hour snooze that felt heavenly.  Ahhh....its good to feel refreshed.

Surgery 5

10:23 a.m.
These pics are from yesterday.  

Surgery 4

Shelby (and I) slept great last night.  She got about 7 hours!  She looks good this morning.  She has been switched back to the regular oxygen.  The high-flow one really helped her yesterday and throughout the night.  They did a repeat chest x-ray so we're praying that it looks good.  Hopefully strides will be made today in getting some tubes out and maybe getting to eat ice chips.

Thank you everyone for the prayers!  Keep them coming please. 

Wednesday, December 15, 2010

Day #2 Post-Op

12:36 a.m.
Wow!  How fast things can change in the ICU - for better, in Shelby's case!  Since I last posted, she Skyped her Uncle, Aunt & cousins and her sister and grandparents, got a blood transfusion, had much success with the Lasix, began respiratory therapy, moved from bed to a chair successfully, STOOD on her own power, helped get herself back in bed, sat up and played on the computer, had more respiratory therapy, got up again - STOOD - and got herself completely situated in bed.  

Thank you everyone for your prayers!  We sure felt them!  Scott & I even snuck away for supper at 11 p.m. in the cafeteria together.  :-)

I have some great pics from all her accomplishments this afternoon, but am too tired to post them.  They'll have to wait until tomorrow.

3:46 p.m.
Doctors are not considering it pneumonia, but are concerned enough to give her a few doses of Lasix, a blood transfusion and begin chest therapy (respiratory therapists pounding on her chest).  :-(  Please pray.

Oh yeah, her fever has been back today, too.

3:22 p.m.
What a shitty day!  She did get out her arterial line (good), but when we went to move her from laying in bed to sitting in a chair her O2 sats dropped down to 71%! (BAD)  The doctor was called in to listen to her lungs.  Things sounded good in there, but the plan to sit her up was abandoned.  She immediately fell asleep and has been for about 3 hours now.  She is on 5 Liters of O2 and and an O2 mask for blow-by air!  Finally, in the past 20 minutes, her sat alarm has stopped going off because she was dropping below 90%  A chest x-ray was done and the preliminary report says that it shows some pneumonia in one lung.  Also, her hemoglobin has dropped so a blood transfusion is being considered.  

After the whole trying to move her fiasco and her sats dropping so low, I went out in the hall and had a nice, long cry.  Enough to have the chaplain come and take me to a quiet room and bring me juice & cookies.  Yup, stress sucks.  Seeing your precious child hurt and not doing well sucks.  Prayers please for strength for all of us.

5:42 a.m.
Trust me, I'd rather be sleeping right now.  Shelby woke around 4 a.m. well-rested and wanted to sit up and watch TV.  So she did.  She did great.  She used her spirometer and was afebrile.  Then about 4:20, she started itching...and itching...and itching...and crying because she couldn't get all the itchies.  Thank God there was already an order for IV Benadryl.  While we waited for that to kick in, the nurse and I tried to keep her from scratching herself raw.  We pulled off her gown, rolled her to the side to allow her back to breathe a bit and put ice packs all over her to cool down the "hot" spots.  It was pretty intense.   We also hit her pain button to give her more meds to make her drowsy.  I'm told its a common side-effect of her pain medication, Diluadid.  

Great.  While writing this, I just noticed her itching again in her sleep so the nurse is calling the pain management team to find out what the next step should be.  Poor kid.

Tuesday, December 14, 2010

Day #1 Post-Op

11:19 p.m.
Wow!  I can't believe its that late already!  A lot has happened since I last posted, but I never had time to get on here and do an update.  What a long day.  Let's see, late this afternoon she went to have her CT.  Scott was with her as it was my turn to run over to The Ronald McDonald house and shower.  When they had about 1/3 of the IV contrast infused, her IV infiltrated.  :-(  The test had to be stopped and they could not use any of her other 3 lines because they were currently is use.  So, back to her ICU room she went only to have to have that IV pulled and a new one put in.  :-( again!  She was very nervous about getting the IV because here they use a J-Tip instead of Emla cream to numb the site.  Daddy was volunteered up by the IV gals to get a J-tip to show Shelby it was no big deal.  That was an amazing moment.  I was in awe of him as he stuck out his hand and just had it done.  For her.  What love.  What a Daddy!  Precious love is what it is.  Back to my story, once she knew Daddy was o.k. with getting the J-tip she was a willing participant.  An IV went in easily in her left hand and then she had an albumin infusion to help pull all the fluid she's been getting out of her tissues and back into her bloodstream.  She had been getting a bit puffy.

Around 9 p.m. we took her over for the CT and all went well.  We heard word from the resident that her graft (shunt) looked GREAT, but there is still quite a bit of "normal" intraabdominal inflammation so no progressing to clear liquids yet...only continuing with the swabs of water.  Shelby's not happy about that because in her mind she already had a date set up with a ton of ice chips, but she's being a really good sport about it. 

She's been moving quite a bit on her own and is using her spirometer really good.  She is on 3 liters of oxygen now; up a bit, but still acceptable.  

Praying for a restful and healing night for my girl....

Man I miss Riley & Avery (really BAD) so if you're lucky enough to cross their paths, please give them extra hugs and kisses from their Mama. 

12:35 p.m.
She's moved a bit around in bed and is napping right now.  Hopefully later we can get her sitting up in bed.  Haven't heard her ultrasound results yet.  We got a room at the Ronald McDonald House - yea!  Scott headed over there to take our luggage and shower.  

That's all for now!  She's napping so I'm going to also!

Surgery 3

8:55 a.m.
Long just didn't seem to end.  Welcome to the life of the ICU!  Day=Night=Day=Night.  Whatever.  We'll get straightened out eventually.  That doesn't matter right now.  Healing is what matters.  A nice balance of rest and some movement today is what matters.  Appropriate pain management is what matters.  That smile that creeps up on Shelby's face when she talks to her sisters on the phone is what matters.

We all did get some sleep beginning around 1:30 a.m.  Scott headed out to the waiting room to sleep and I snoozed by Shelby's bedside.  Shelby slept until 5-ish and then went back to sleep until about 7, but spiked a temp of 102 around 6:20 this morning.  Several blood cultures have been drawn on all her lines to check for infection, but they say that it can still be a "normal" response to the surgery and the "trauma" her body has been through.

Today she will have an ultrasound (ouch) to make sure that the blood flow is good at the "new" connection.  I'm told there will be "preparation" for that in regards to making sure she is all dosed up on pain meds for that.  She has been trying to work on taking some deep breaths, but has discovered that it is painful to cough and is NOT a happy camper about that one.  During one coughing episode her O2 sats dropped to 86% and she was upped to 2 liters of O2 for a while.  She's back down to 1 liter now and her sats are hanging out at 95%.

They were concerned about her amount of urine output so they have been giving her 350 mL boluses of fluids.  Last night when we fell asleep she was up to 1400 mL on those!  She is peeing, but not enough.  No signs of fluid retention, though, and her bp is good.  A CVP (central venous pressure) monitor was hooked up to her central line last night to get a more accurate measure of her hydration status.  It showed that it was low.  As of this morning, she has not had any more boluses and the word I've heard so far is that her urine output is better.

This will be a long, tough day for her.  She will (hopefully if the ultrasound looks good) get her NG tube out.  Please pray that there is great blood flow in her shunt.

Monday, December 13, 2010

Surgery Day

10:35 p.m.
Sorry to be so absent readers, but I had internet connection problems from my last update until now - ARGH!  How frustrating!  Anyway Shelby has been doing fantastic.  What a great patient!  She is feeling pretty rough, but not complaining of any pain - that's what a good "background" dose of Dilaudid (pain med) will do for you plus a PCA pump.  She's been having some low grade temps and they've been putting ice packs on her to keep her cool.  She is really having trouble now staying asleep, though.  She dozes off only to wake a few short minutes later.  Thank you everyone for your prayers and well-wishes.  We truly felt them today.

I've posted several post-op pics.  Please be warned if you are squeamish at all, that the very last picture in this album is of her incision.

Surgery 2

3:07 p.m.
SHE'S OUT.  SHE DID GREAT!!!  SHE'S EXTUBATED!  We've spoken with the surgeon and other than her splenic vein showing some thickening (possibly an old clot) that made sewing it up a little tougher than usual, things went great!  We are (im)patiently waiting to go to the PICU to see her.  

2:10 p.m.
We are anticipating hearing the final phone call from the OR any minute now.  So far she has remained stable and has not needed any blood products.  :-)  I cannot wait to talk to the surgeon and then finally see my little girl, but that will still be a while.  She will go directly from the OR to the PICU.

12:02 p.m.
Update from the OR about 20 min. ago.  All is going well.  Should hear again in another 2 hours.

Aunt Lori was super brave and drove in!  She's here to join me, Scott, Mom & Dad while we worry/wait.

10:00 a.m.
First update from OR.  Actual surgery started about 9:40.  All lines were placed - an IV in each hand, an arterial line in her right hand and a central line in her neck.....................

9:18 a.m.
About 25 minutes ago I left the OR.  As the gas started to take effect, she was saying "I don't want my distal splenorenal shunt" over and over again as tears fell from her eyes.  She was so brave.  She did not try to pull off the mask.  She is amazing.  That is courage.  She cracked everyone up all morning - HER - the one who should need comfort was giving comfort to US.  AMAZING.  When Dr. Superina (the surgeon) came in she looked at him in his coat with his bag and said "Um, shouldn't you go get ready or something?"  What a stitch!  She told the nurse in the OR that her hands were cold so Shelby didn't want her touching her until she was asleep!

Please pray for my baby.  Right now they are placing all her lines - 2 IV's, 1 arterial line, 1 central line, a bladder catheter and she'll be intubated.  The OR nurse will call us every hour or so and hopefully we'll hear in the next hour that the actual surgery has started.


Sunday, December 12, 2010

Operation Eve

Yes, isn't that nice?!  I forgot to pack her any pj's!   So Daddy's Packers sweatshirt will have to do, especially when she is so cute in it.
My parents and Scott are already asleep.  I can hear Shelby whispering to herself on the roll-out bed (she thought it was really cool and wants to sleep there, not with me :-(  The only light in the room is my laptop.  I am so exhausted, but I just want to stay awake and make tomorrow not come.  I want to rub her tummy before it has a new incision/scar.   I want to tell her of the HUGE suitcase in the van with all the surprises we have lined up for her this week.  I want to say "Surprise!" that wish you made on your eyelash came true - No surgery.  But that's not so.  So tonight, I'm thinking of all the giggling she's done, the amazing calmness she is exhibiting and her awesome attitude that life goes on - no matter what - it just does.   That's all she knows.  Thank you God for her amazing spirit. 

Saturday, December 11, 2010

Soaking it all up

I am sitting here in my comfy, cozy red chair with Riley and Shelby on the couch reading.  The christmas tree looks just beautiful and we still have yet to turn off the White Christmas DVD.  Ahh....I'm just enjoying all this.  I know that these are just some of the things I'll miss for the next week or so.  Trivial things, maybe, but comforts that you begin to long for when away from home, especially in a hospital with your child.  I wish Avery would have gone for my plan of snuggling on my lap and falling asleep, but no such luck.  She wanted me to lay with her in her bed and she drifted off to sleep in moments.

The stress level started out pretty high around here this morning with the big girls yipping at each other left and right.  I said something to the effect of that none of us wants Shelby's surgery to happen, but we all know that it is the best thing for her.  We will not like this next week, but we will make it so let's not ruin our day together.  That and going sledding helped calm things down. 

I think we're pretty much packed.  My mother-in-law landed safely (thank you God!) late this afternoon at O'Hare and is safe and sound here in Rockford.  I have no more laundry to do; all my lists have been made and printed out for everyone.  Now, we (Scott, Shelby & me) and my parents (if we don't get a room at the Kohl's House or the Ronald McDonald House for tomorrow night) need to make it safely into Chicago tomorrow afternoon.  Shelby has to have labs drawn, eat at her favorite Lincoln Park restaurant and we will all be staying at a motel together.

I hope she lets me hold her tight all night....

Thursday, December 02, 2010

School decision

Scott and I decided, and were reassured that our decision was right after talking to Shelby's school principal, that we are not sending her back to school between now and her surgery.  She just picks up things too easily and we do not want her surgery delayed if we can (try to) help it.  In just a few more days she'll qualify under her 504 plan to have a tutor here at home.  Her very-wise principal said "Jenn don't worry about school.  Tell Shelby that I won't let her get far behind and when she's ready to come back we'll have people here to work with her."  Thanks, Ms. HB, for that reassurance. :-)

Shelby's dermatologist called and said that she thinks this "rash" is seborrhoeic dermatitis...or maybe psoriasis.  Anyway, she woke up Wednesday and it was very, very faint.  Go figure.  Everyone agrees (surgeon, pediatrician, GI, dermatologist) to keep her on the Cleocin for the 10 day course.  We also have 2 prescription creams to use on her face; 1 in the morning - 1 at night.  Now we are up to 38 med doses a day!  YIKES!  Dr. Superina said they would be a few more added for about 6 months post-op, too.  I feel like I need a degree in pharmacology just to schedule all these; this can't be taken with that; this or that need to be scheduled an hour apart; blah, blah, blah, blah, blah.

Yea.  I think the stress of her surgery is getting to me.  Night.