Elephant in the Room

I have not had trouble sharing on here before.  That is, sharing in depth Shelby's medical situation.  I have touched the surface of talking of how it affects our family...the surface.  Tonight I am going to do my best for me and for those out there reading this blog who may be facing this same path.  Finding others going through or who had gone through what we were facing when Shelby was a newborn is what saved me.  Its what said to me "others have survived this, we can, too.  Biliary Atresia is NOT a death sentence.  Transplant is more common than you think."  Through talking and sharing with others on C.L.A.S.S. kids and now on Liver Families I have persevered, and, I believe for the most part, thrived.

Shelby's recovery from her shunt surgery is going amazingly well.  Today, we had some concerns about this "lump" that appeared today.  It was not there last night.  It is tender to the touch and red (although that does not show up in the pics well) and feels hard when you touch it.  I can push everywhere else around her scar with no problems and it is nice and soft; not at this area.  MANY phones calls were made and I finally heard back this evening from one of Dr. Superina's associates.  He said if she has no fever then just watch it.  Great...waiting for that shoe to drop.  Honestly, I'm concerned that its a hernia.  When she coughs, it bulges out more.  Since this is something involving her surgery, we would have to go to Chicago to have it looked at.  Right now, Scott and I have determined that it can wait, but it is still not sitting right with me.

The redness does not quite show up and its ABOVE her incision, not on it.

Please excuse my poor attempt at using "paint" to mark the area I'm talking about!

Back to my "sharing."  Despite Shelby doing so well and her recovery being so amazing, I am not doing amazing.  I am still a bit shell-shocked from all this.  I already have an appointment set up with my counselor for this week to talk about this, but if I don't share it on here, what happens to that other parent experiencing something similar who is afraid to talk to someone and share their feelings?  I know how much I have been helped by others, so now its my turn.  The PICU was a scary place.  I really believe that the weeks leading up to Shelby's surgery and all that worry about it were less traumatic for me than spending 6 days in the ICU.  Post-op Day #2 when I had my "breakdown" was to put it mildly.  I cried so hard that I felt physically exhausted; like I cried it out from my toes all the way up my body.  Buckets of tears fell, and, get this, my child was doing pretty "good" for an ICU patient.  Seeing her improve after her blood transfusion and being put on the high-flow oxygen was helpful...until Friday night.  I was SO happy to have all 3 of my girls together and my Mom there, but there was a death in the ICU that evening.  A death of a child.  A grieving family in the halls.  White curtains set up for privacy.  An entire hallway closed off.  Gut-wrenching.  It is sitting with me and not moving.  I know that someday we have to go back to the ICU.  She will need to after her transplant and will be much sicker after that surgery than she was after this one.  I am trying to not dwell on that future and enjoy how well she is doing, but part of me just won't let me.  Posttraumatic stress disorder is so common in so many people for so many reasons.  It is frustrating and scary to go through it knowing that you should not be so worried.  Sleep SUCKS for me since Shelby's surgery.  Many nights its 3 a.m. before my eyes will even attempt to close and then I am haunted in my sleep.  Horrible sleep.  Restless sleep.  I pray to God for peace; I plead, I beg.  But this is a part of the physical side of me.  One that will take time to work through and most likely an increase in some of my meds.  Sigh...I will survive and then I will thrive again, but its going to take some time. 

Lookin' good

Upper left - right before surgery, Upper left - day after surgery, Lower left - yesterday, Lower right - today

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

Merry Christmas!

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!

HOME

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

Click on picture to see entire album

Home!

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! :-)

 

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.

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. 

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.

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 night...it 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.

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.

Surgery

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. 

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....

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.

Meeting with the Surgeon

Today's appointments went well.  Shelby enjoyed her time talking to her Dr. Jill then we decided to fill our 3-hour gap between appointments by going to the Peggy Notebaert Nature Museum.  It was a lot of fun there and totally beat hanging out at the hospital.  Avery was totally psyched to hang out in the butterfly haven; Shelby not so much.  Shelby not at all, in fact.  When the really huge butterfly landed on Avery's head and then proceeded to hang out on Shelby's backpack, she decided she'd had enough.  Hopefully my Mom got some great shots of the amazing butterflies and Avery enjoying herself.  

My time talking with Dr. Superina was fine; very reassuring to me....other than him running over an hour late!  Shelby's "rash" decided it would flare up in clinic so the NP and Dr. Superina were able to see it.  He would like her to see her Dermatologist (of course, in Chicago) next week (:-O)  He said he would get in touch with the Dermatologist about her seeing Shelby and we weren't on the road more than 30 minutes and I got a phone call from her office asking all sorts of questions and wanting me to e-mail the pics I've taken of her skin.  No word yet on the cultures taken last evening.

Dr. Superina said Shelby's MRI looked fine and that all was a go for the 13th.  He said he will not be able to use her Kasai incision because she has grown so much since then and it is now up high by her ribs.  He will have to create a new incision, but hopes that that one can be used again when she has her transplant.  It appears that the incision will be 4-5 inches long.  She will not be able to do any activity, like gym, for 6 weeks so she has quite a recovery time ahead of her.  He said that her spleen should go down in size as soon as during the first week post-op!  The platelets and blood cells, however, will take longer to show improvement. 

Now, its just time for this to happen.  Only 13 days to go...I totally trust this man with my little girl.  Just to remind him of what an amazing kid Shelby is and what a precious gift of mine I am placing in his hands, I showed him this (we each made a feather for a "Thankful Turkey" on Thanksgiving) ~

~ in case you can't read her writing it says:  Shelby - I'm thankful for Dr. Superina, my surgery, sisters, Disney channel, Santa! and the best Christmas presant which is Kayla coming..and everything!

Right now I have Shelby beside me saying that her tummy hurts so bad she can't go to sleep.  There is nothing I can do for her; nothing.  We've tried so many things and she's maxed out on the meds she can take for it.  I pray that somehow this surgery helps her tummy pain, too.  We would appreciate your continued prayers.  Thanks.

The Past 3 days

For those of you who are not on Facebook, I am sorry.  I said I was going to update here more, but the past few days I've fallen back to FB.  I didn't think there was that much to update so I did short ones on there....but that seems to have turned into a 3-day saga that has not ended yet.  Saturday afternoon I noticed a clear fluid-filled blister on the inner edge of Shelby's right eyebrow.  Very concerned that this little blister, showing up out-of-the-blue, could lead to a repeat of this, I called the on-call GI here in Rockford.  She ordered labs so we could see what Shelby's little body was doing.  They looked o.k. so we were told to just watch her.  No fever and she slept well that night so I thought when she woke up Sunday morning all was going to be well.  Wrong...  


She woke with what looked like a scab where the blister was and this really red "rash" under that eye.  The on-call GI was called again and she wanted Shelby to get looked at at Immediate Care.  We spent a good 2 hours there Sunday afternoon only to be diagnosed with impetigo and sent home on Cleocin.  In the 1 1/2 hours between dropping her off at home and finally getting home from the pharmacy with the filled script, her rash had doubled to what you see in the pics. 

Again, we called the on-call GI and she thought it would be best if we headed to the ER to be admitted for overnight observation.  We spent 5 hours in the ER only for it to be decided that it definitely was NOT impetigo, nor anything infectious, and that Shelby did not need to be admitted.  I reminded them of March 2009 and said "Ok," but still did not feel right about things.  Shelby and I arrived home after midnight and quickly fell asleep.


She did not wake until after 11:30 this morning and I was happy to see that the redness had faded quite a bit, but very frustrated to see that she had developed 2 new small blisters on the other eye's inner eyebrow plus the original blister had filled with some fluid again!  I put a call into our GI because they had already called this morning checking on her and relayed what I saw.  I also added that Shelby had been having "unusual" BM's for the past 4 days.  They ordered stool cultures and wanted us to see our Pediatrician to have the blisters cultured and Shelby was to re-start the antibiotic that she received from the Immediate Care doctor yesterday.  I was very disappointed to find that our Pediatrician was out sick today and her partner was not in.  So...that meant, back to Immediate Care!  ARGH!!!  Shortly after they opened at 5 p.m. we got there only to wait about an hour to be seen.  Once the doctor came in and looked at her he said "there is no fluid.  I cannot culture this."  I explained to him that the blisters had "waxed and waned" throughout the course of the day.  He then proceeded, with pictures, to try to tell me what a blister was.  I then lost it and explained to him (again) her history and that, yes, I knew quite well what a blister was.  At that point he asked - although I had already told him - who wanted us to come in.  I told him our GI and he proceeded to scoot out of the room before I blew up any more.  He came back in the room singing a different tune and said the GI did want the blisters cultured, even if he felt there was no fluid at the current time to get out of them.  Swabs were taken; he said he understood our medical worries and told me a family story involving (his?) child who had medical issues and all the time they spent in the hospital and walked us out telling us that God was with us.  I hate it that I had to get so insistant, but, as I told Shelby, this Mama Bear will do anything for her Baby Bears.  Anything.  Even if that means yelling at a doctor.  Sigh.  So now we wait and pray that nothing yucky comes back on her cultures AND that she does not wake with anything "new."


Tomorrow, we go to talk with the surgeon about her MRI results and surgery.  I pray that her surgery is not delayed because of this skin "stuff."  Shelby also gets to see her Dr. Jill who I am sure she'll have an earful for.  Especially after seeing Mama Bear get so fired up tonight.


In 2 weeks, Scott and I will be sitting in the PICU next to our sweet Shelby.  I pray that she may have very little pain, good pain management, skilled doctors and nurses, patient parents and a speedy recovery. 

Thankful

Thank you Christ UMC. Thank you. All this plus a 22-lb turkey (and other stuff already in put in our freezer) was delivered to us yesterday. We were not the only family to be recipients of such a generous gift. Christ UMC delivered many of these "baskets" to many families in our area. Yes, right now is tough; its stressful; I'm not able to put in many hours working and that puts a strain on things financially. This is a most welcomed gift. I don't feel its charity or giving to us "poor." I feel its a gift of love; of others taking care of others. Riley struggled a bit seeing all this here at our house when she is fully aware that her school is collecting canned goods & non-perishables for the Salvation Army's food drive. She questioned why we were getting all this. Was something wrong? I told her its others showing their love towards us. Love one another. Plain and simple. May you all have a blessed Thanksgiving.

John 15:9-17
“As the Father has loved me, so have I loved you. Now remain in my love. If you keep my commands, you will remain in my love, just as I have kept my Father’s commands and remain in his love. I have told you this so that my joy may be in you and that your joy may be complete. My command is this: Love each other as I have loved you. Greater love has no one than this: to lay down one’s life for one’s friends. You are my friends if you do what I command. I no longer call you servants, because servants do not know their master’s business. Instead, I have called you friends, for everything that I learned from my Father I have made known to you. You did not choose me, but I chose you and appointed you so that you might go and bear fruit—fruit that will last—and so that whatever you ask in my name the Father will give you. This is my command: Love each other.

Tuesday

HOME. :-)

Monday

7:37 p.m.
Today Shelby had lots of fun with Miss Avery. She is feeling well. Please, blood cultures, stay negative so we can leave tomorrow. Enjoy the pics!

Avery & Shelby getting ready to go ride bikes in the hallway

Shelby on her hot-rod

Avery on bike #1

Avery in bike #2

Avery chillaxin'

All pooped out. Hangin' in bed together. :-)

10:01 a.m.
Shelby is feeling great and this morning's labs show that her wbc differential is much better. As long as her blood cultures continue to be negative as of late this evening, she will be sprung tomorrow morning. She is more neutropenic, though, but that is "normal" for Shelby these days so no one is concerned about that. Hopefully we'll have a very uneventful (medically) day; a day with Shelby is always eventful ;-) Thank you everyone for your prayers and well-wishes. I pray that this is our *only* bump in the road before surgery.

Sunday

4:57 p.m.
Today has been full of wonderful visits! Early this afternoon we had Carolyn, Tara & Stuart Glenny visit for a few hours. Carolyn & Tara helped Shelby make a doll. Then, Grammie & her sisters came. We worked on a Thanksgiving craft and enjoyed hugging eachother. Now, her BFF, Kayla, who moved to Atlanta this summer, is here. She came back to Rockford to visit her grandparents for Thanksgiving and was able to come up to the hospital tonight. This is GREAT medicine for my Shelby.

Please say a prayer for Scott. What a heavy load he is carrying! Clinicals, classes, working nights...its taking a toll on him.









11:10 a.m.
Night went fine or should I say morning. Shelby finally fell asleep at 3:30 a.m. with her hand in a bag of goldfish crackers! Today's labs are about the same; slightly improved (?), I think. Her ANC is down a bit which makes her neutropenic, but it is closer to her "normal." No sign of the fever - yea! Now we just bide our time and wait on the blood cultures. Of course, Shelby thinks its time to live it up! She has plans already to decorate her hospital room and is waiting (impatiently) on Child Life (like she's the only patient). I love her so much! Keep on swimmin, swimmin, swimmin, my little Dory!

Fever...tummy pain...yup, ER

10:21 p.m.
Did I really know deep in my gut this morning that something was up with Shelby? She and Avery stayed the night at my parent's house because Riley was having a slumber party. On the way to work this morning I called my Mom to see how their night went. She said Shelby woke up around 7 (her usual, no matter how late she stays up), but fell back asleep on the couch. I thought that was quite strange...anyway, my Mom said she woke up just fine and was acting normal. After work I went to pick them up and stayed a while watching videos of when Shelby was born. Around 4:30 we headed out and Shelby had started complaining shortly before then that she wasn't feeling well. Avery was wwaayyyyy over-tired and fell asleep within minutes of leaving. Shelby continued to feel worse at home and started to develop a fever around 6:30. I put a call into Dr. Deutsch (her GI - thank goodness he's on call this weekend) and he said wait to see if her temp hits 101 then head to the ER. Two hours later her temp was up to 100.8 and she was crying about her tummy pain. Time to head in, I decided. So, I called up my Saint of a Mother (who only and finally had a few hours kid-free) to have her come over to stay with Riley and Avery. Avery just woke up from a nap that was from 4:30-8 - NOT good. Sorry Mom! I was hoping she'd sleep through the night! Scott is here at the hospital working tonight. So, the ER doctor who first took care of her when she was only 5 months old, has been in to see her; urine has been collected; Emla cream is numbing up potential IV sites and we sit and wait in an all-too-familiar place. It doesn't even phase my crappy feeling kid that she is in the Emergency Room. She's sitting there playing her DS and eating ice chips. I wish I could act that good when I don't feel well. What a trooper! What a great attitude to make the best lemonade of the lemons that have been handed to her. Gotta love her. Most likely, this will lead to a minimum of a 48-hour admission on IV antibiotics while we wait on blood cultures, but....I'd love to be wrong. To be continued.....

12:35 a.m.
Being admitted. High bands and low lymphocytes (parts of the white blood cell count), chills, fever (which is gone now)...looks like an infection. She will be put on IV Zosyn until we hear on blood cultures. That could take as long as 48 hours. Prayers please.

Well, I was hoping to do this update yesterday....

BUT, Shelby's MRI ended up taking 2 1/2 hours! I don't know what all the confusion was exactly, but something like they needed more views to get what Dr. Superina wanted and she had to be intubated b/c she was asleep and you can't ask a sleeping person to hold their breath for certain shots, now can you?!? Anyway, when we finally got to see her about 3 p.m. (after pacing the hall right outside the room) and she was OUT. Once she finally woke up, the first thing she said in her little scratchy voice was "I'm hungry." That's our girl!! Her throat is very sore from being intubated :-(

We were supposed to have our appointment with the surgeon at 1 p.m., but because of everything running behind and Shelby's test taking so long, we weren't able to see him at all. Now we have to reschedule! ARGH! Very frustrating! Scott skipped classes to be there yesterday, not only because Shelby was getting anesthesia, but also so he could be there to ask questions and talk to the surgeon. Now that 's not going to happen.

Since it was rush-hour time when she was discharged, we threw her in a wheelchair and headed to her favorite restaurant in Lincoln Park, Bacino's, for some supper. She ate pretty good, but also was very tired. We got home sometime after 8 p.m. and all 5 of us crawled into bed together. That made the day all better for this Mama. :-)

MRI and meeting with surgeon

Crazy Avery at Tot Spot class this week

Our 11-year-old!!!! Riley's birthday was yesterday!

Me and my 11-year-old

1:27 p.m.
Shelby is having an MRI under general anesthesia right now. Her surgeon wanted her to have one before surgery. She was to go in at 10:30 a.m., but they did not come for her until 12:30! She was one hungry little girl. We are just waiting for them to page us that she's done. Once she can leave recovery, we'll head up to meet with the surgeon in clinic. Our appointment was supposed to be at 1 p.m., but obviously we've missed that so we'll have to wait until he can squeeze us in. It will be a much longer day than expected. At least Scott made arrangements to miss class today so he is with us.

Sorry for lack of updates

We saw Shelby's GI here in Rockford last Monday for her tummy pain. He thinks it is her functional pain and is not surprised that it "flared up" a week after her learning that she was going to have surgery. Makes sense to me. He put her on peppermint oil for her tummy aches and suggested that we avoid things like sugar-free gum to help minimize her discomfort. She has been doing better,tummy-wise. Scott and I did notice, though, that her HE symptoms were back. A level was run and her ammonia is up a bit to 83. Her med for that has been increased a bit and we'll re-check it again in 2 weeks. Shelby is now on 33 doses of 15 meds a day!!!

We are busy working on making arrangements for Riley and Avery while we are in Chicago with Shelby during her surgery. Scott is doing awesome in nursing school and I go to see the Nephrologist next week to see if he has figured out my potassium "issues." That's all for now.

ARGH!

So...on Thursday afternoon I received a phone call from Shelby's GI's fabulous nurse. She said it could be seen on Sunday's (Immediate Care) and Wednesday's (ER) x-rays that Shelby did have a large amount of stool in her. A CT was NOT necessary! All that exposure to that extra radiation was NOT necessary! Makes me so mad! Anyway, the nurse recommended a 2-day clean-out using Miralax. So, here we are after the clean-out with reduced tummy pain, but wondering how "clean" she actually got. Her Levsin is still a larger dose than usual and x-lax chocolate (she loved it) has been added to her nighttime meds. We'll see what that brings in the a.m. We'll follow-up with her GI this week to talk about a new game plan to keep her even more "regular." Poor kid. This on top of everything else.

Shelby in ER

4:47 p.m.
We've been here a while now this afternoon and still really don't know anything yet. For about a week she's had intermittent tummy pain that now has gotten worse. She had an abdominal x-ray at Immediate Care Sunday night that showed some "backed up" stool, but we did a clean out on Monday and thought all was good. She made it about 1/2 a day at school today. We're waiting right now on lab and x-ray results. Prayers please.

6:44 p.m.
All labs have come back as "Shelby's normal" except her Alkaline Phosphatase is elevated (and it is normally NOT). A CT scan with oral and IV contrast has been ordered. Her tummy pain keeps coming and going.

10:09
CT done. Waiting for results....Doctor just came in. CT looked fine. Showed a lot of stool. They are giving her a dose of Levsin (she's already on that; they're just giving her a larger dose) and sending us home. We are to follow-up with her GI doc in the a.m.

Meeting with the surgeon

First of all, let me just say for the record I'm NO fan of my sweet Shelby having surgery. NOT. AT. ALL. But, after spending 2 hours talking to Dr. Superina I do understand why the surgery has been recommended. Finally, he explained everything going on with Shelby in a way that made sense to me; that made doing this shunt make sense. Pretty much after talking with him today, grilling him with questions and going over Shelby's last MRI with him we have decided that we are going ahead with the surgery. It will most likely happen in December. It is not urgent, but not something we should put off, either. His schedule isn't open until December. Hopefully we can schedule it between Scott's finals and Christmas.

We really grilled him on transplant vs. shunt. He spelled it out very clear. She does not have the risk of dying with the shunt surgery like during transplant. Chicago very much so believes in treating the symptoms and not rushing to transplant. Shelby's problem is with her spleen; yes, her spleen has problems because of her liver disease, BUT she has well-compensated cirrhosis so there is no reason to transplant her. Yes, a "new" liver would take care of all her existing problems BUT - and this is a HUGE BUT - it could bring many new ones with....and very well would. Immunosuppressant meds are very harmful to the body. They must be taken, but can cause many problems, including cancer. Dr. Superina was quick to list 5-7 very nasty complications from transplant surgery. One of the things we wanted to discuss was about our desire to seek a second opinion and he seemed to be alright with our wish but really made us think about what we were really looking for. He stressed that we should know what questions to ask and that we were in this situation because Shelby doesn't fit into ANY mold thus making a diagnosis from someone unfamiliar with her would be difficult at best. He pointed out that there were really only two options for most centers, transplant or no transplant and if transplants are all you do what else can they offer. I loved they way he put it " If you're a hammer, everything looks like a nail." He admitted that if we went to multiple centers we could get someone to transplant her, but that quite a few centers would say to remove the spleen. As far as we have heard this is not a good idea for a child but Dr. Superina explained that in most centers it's the adult surgeons that handle these cases even when kids are the patient. He was not trying to persuade us, but gave us very useful information and educated us.

Ultimately the decision to do the surgery is ours as Shelby's parents. After yesterday, I cannot think of a reason to NOT do this surgery. I do NOT want my Shelby going through this pain and recovery, BUT I do not want her to be so susceptible to catching "regular" illnesses that can turn deadly for her. Plain and simple.

We would appreciate prayers as we wait...

(Thank you to Scott for helping me write this entry :-)