No update = Good news

Sorry to be absent for so long, dear readers, but things have been busy and not too bad around here.  Shelby's birthday was great and she is officially 9 now :-)  We also had Avery's birthday.  Four!!!!  Didn't I just have her?!?!?

Shelby's ammonia level was high (just above 100) when we were in clinic mid-March.  She has been started on Lactulose to help bring it down and as of last week's labs it was in the normal range.  Her wbc & platelets, though, still sucked.  A little less than 2 months will be 6 months since her shunt surgery and while her incision is healing beautifully, her numbers should be better than that.  The surgeon said the spleen did a really good job of being bad and it will take a while for it to correct, but its getting down to crunch time.  I have no idea what will happen if we hit that 6-month mark and have no change in her numbers....and really, right now, I don't want to know.  One day at a time.  And today is good.

April 1st my friend Michelle passed away at the age of 33 from colon cancer.  Not only did I grow up with her and her brother, Nick, but Nick's daughter and Shelby are best buddies.  Very sad.  Then the next week, I got an e-mail from my friend, Karin, who is in her early 40's.  Her mother just passed away last month from breast cancer and Karin was diagnosed with colon cancer.  Thank God the cancer has not spread, but she is in for a really tough treatment.  Please pray for her and her 3 boys.

Today we celebrate Scott's 44th birthday.  I'm glad he has the chance to sleep in today - his college is closed today - he really needs it.  He is working his butt off and I am so proud of him!  He keeps getting the top test scores in his classes!  He will be a GREAT nurse!

Well, that's all for now.  Enjoy the pictures.  The girls are growing so fast.  Riley is only a few inches shorter than me and we wear the same size shoe now.  She's not a little girl any more :-(

As we wait patiently for Mother Nature to warm up the outside, may our hearts be blessed knowing of the promise of new life in Jesus Christ!  Happy Easter!

Spring 2011 update

HOME

We made it home yesterday.  Our nurse was great at reminding the doctors if they were going to discharge Shelby that we REALLY needed to hit the road by Noon - Scott needed to get home to sleep for work at night and I had a thirty-one party at 2 p.m.  We made it just in time!

Shelby is doing great, but my Riley is still not feeling so great.  No fever since Friday, but her stomach still hurts :-(

Tomorrow Shelby turns 9 - unbelievable!  I'll post more then.

(P.S.  Please pray for Emerson - her blog can be accessed in the right-hand column.  Part of her transplanted bowel had to be removed this week and the remaining part has perforated twice!  She is so sick!  Please pray healing prayers for her.  Thank you.)

It can change SO quickly!

7:57 p.m.
Shelby was admitted.  They do not have her on any meds, but wanted to watch her overnight.  Her fever is finally down to the 99-range and she has perked up quite a bit.  

Riley is not feeling well, either, but they don't have the same symptoms!  Scott met my parents in Elgin and did the Riley & Avery exchange.  He is back here with us for the night in the hopes that she gets sprung in the morning.  

9:05 a.m.
Shelby is undergoing skin patch testing this week.  Tuesday we went to Northwestern, she had the patches put on her back, went to Children's and saw her hepatologist & surgeon and had an abdominal ultrasound to check on her shunt.  We got a good report that day.  Her wbc & ANC still aren't good, but her spleen still felt smaller.  Scott was not feeling well that day and went to Immediate Care and tested positive for strep.

Shelby tolerated the skin patches well and when they bothered her, Benadryl did the trick.  All 5 of us came in yesterday, the skin patches were removed and we set out for some Chicago fun as you can see in the picture album.

Chicago 3.17.18.11

Last night Shelby started complaining that her tummy hurt.  She did not sleep well and around 6:30 a.m. I felt her and she was warm.  Her temp was 100.8 - not bad, but with the only symptom being tummy pain we headed over to Children's ER (we stayed at the Kohl's House last night).  Here her temp has spiked to 102 and she is NOT my Shelby.  She is crying over everything.  The exam, putting on Emla....NOT Shelby.  She doesn't even want to play her DS!  She is resting right now.  Like I said, NOT Shelby.  So far, her strep test came back negative and they are waiting to hear from her docs here on what tests to run.  :-(

Prayers please...

Since the flu...

Shelby did get over the flu just fine.  In fact, Riley & Avery seemed to deal with it longer than Shelby.  Shelby's white blood cell (wbc) count and ANC (absolute neutrophil count) did not like the flu and decided to take a HUGE nosedive.  How did we know, you ask?

Shelby's teacher called right after school last Wednesday and said Shelby just was not herself that day.  She was very concerned.  Riley had some concerns about Shelby's behavior, too, as they had spent a lot of time together while sick.  I took her immediately for labs to get her ammonia level checked and, on that lab order, are a bunch of other tests.  So we found out that her ammonia was a bit more elevated and her wbc & ANC were bad, bad, bad.  We kept her home then until today when she had labs repeated.  Those numbers have improved enough for her to go back to school tomorrow - phew!

Her ammonia is a bit of a mystery.  One doctor wanted to put her on a strong medication with not-so-great side effects because when I called asking what to do they interpreted that as "PUT HER ON MEDICATION!"  Yeah.  That isn't what I was asking.  Her liver doctor is now managing this and saying to keep a log of her behavior between now and clinic and we'll talk more about it then.  Seems like this will be something Shelby will have to deal with for quite a while and we'll just have to make accommodations.  {{{Sigh}}}

March is a super-busy month for doctor's appointments in Chicago.  She has 2 this Friday, 3 on the 15th, 1 on the 17th and 2 on the 18th.  Can you believe we go there so much and things are relatively "calm" for her?  It would be so nice to have a big center that takes care of all this right here in Rockford...I know, I know, a girl can dream, right?

Please pray for our little friends Emerson and Aiden as they are walking such tough roads right now.

(Also, I became an Independent Consultant for thirty-one gifts.  I am very excited about this new opportunity & would love the chance to introduce you to the great products we sell.  Even if you're out-of-state, we can work something out.  Shoot me an e-mail @ pnutsmom76@yahoo.com if you are interested or visit my thirty-one webpage.  Thanks!)

The Flu.

Little Miss Avery ran a low-grade temp last Tuesday and was very irritable.  Just ask Grammie & Grandma Marian.  :-)  Wednesday she was perfectly fine; that is, until 2 a.m. when I awoke to her burning up next to me and she had a temp of 101.5.  Off to the Pediatrician's in the morning we went.  No strep, phew.  She was not swabbed for the flu, though.  I was told it was just a virus and I brought her home to spoil her, I mean take care of her.

Friday Shelby came home from school and said her throat hurt.  OK, I thought, she has strep.  I ran an errand and when I got home she had a temp of 102.  We took a deep breath and said, "better take her to immediate care."  We wanted to get her on antibiotics soon if it was strep.  Strep is really going around here in our area.

Nope, not strep.  Type B influenza.  Since her symptoms just started she was prescribed Tamiflu.  We got home and Riley had returned from a school dance...not feeling well. :-(  She had a temp, too.  ARGH!  

The night went OK between the trio of nose blowing, coughing, sneezing and snoring.  Saturday brought more fevers and 3 girls feeling yucky.  I did call the Pediatrician and was able to get a prescription for Tamiflu for her.  It was too late for Avery to start taking it.

Shelby did give me a bit of a scare Saturday as I noticed her left arm, chest and back had petichiae and she had 2 purpura under her right arm.  Her nose was also bleeding much more than usual.  Since she is on Plavix to help keep her shunt open this was all very concerning.  I called the on-call doctor in Chicago and was told if it got any worse she had to get labs done.  Thank goodness Sunday morning everything had faded.  Phew!

Scott woke up mid-Saturday afternoon (he had been sleeping for work that night) sneezing.  Like non-stop.  Poor guy.  He was the next one for the flu to take down.  He had to call in to work.  So far, no fever for him, but he did rest a lot yesterday.  He went to school today.

So far, so good for me.  We are definitely keeping kleenex in business in this house.  I keep using hand sanitizer between wiping noses (Avery's, not Scott's).

Right now I'm feeling pretty let down by the flu shots we received in the fall, but I've been told that everyone would be much sicker had we not gotten them.  OK.  Praying for health around here, BUT happy a certain little 8-almost-9-year-old-girl gets to fight this one out at HOME.  

Dermatologist Visit

Last Friday we trekked into Glenview for Shelby's dermatologist appointment.  By "we" I mean Shelby, Avery, my Super-Mom and Me.  Shelby hadn't seen the dermatologist since last spring, but we had been in touch by phone with them several times over her developing skin conditions.  Her face started out as very flaky eyelids which they called dermatitis.  Then, if you remember, this fall she had those blisters and red streaks (see pic above).  This continues unless we use her creams twice daily.  We used to be able to get them under control and not use the cream for a couple of weeks; not anymore.  We miss one day and its all back.  In fact, she still has quite a bit going on with her face despite using the cream (see lower pic above).  So, I decided it was time to see the good ol' skin doc again now that we have that whole "major" surgery behind us.  

Dr. Paller took a look at her and the pictures I had sent back in late November/early December, asked a bunch of questions and decided it really looks like Shelby has contact dermatitis.  But...to what is the million dollar question.  Turns out to determine this she needs patch testing done and its very rare to do it on children and there are very few specialists who do it.  Dr. Paller called Dr. Martini at Northwestern - her first choice of who she wanted Shelby to go to - and got Shelby in when there's no openings until August.  Its a 3-day process.  Actually we have to go in for an initial consult, then a few weeks later we go in for Day 1)  putting on all the skin patches on her back, Day 2) two days later getting them removed and Day 3) having them read and interpreted.  Wow!  Amazingly, I have it all scheduled for March despite our crazy busy life already!  This is really important to figure out what's causing this on Shelby's face because a)  she's a girl and just wants to look good and b) its getting worse even though we use fragrance-free products already.  So we shall see...

We got tons of more fragrance-free samples - shampoo, conditioner, soap, lotion - you name it, we got it!

Samples from the Dermatologist

I had my follow-up with the dermatologist on Monday.  No more spots so no need to do a biopsy.  She was amazed they were gone considering how bad they were.  If and when they reappear I am to get an appointment right away to have them biopsied.  

We are all enjoying be home together for the SNOW DAY!  Hope everyone is safe and warm!

February

:-)

I thought the smile was a good title for this post.  I'm feeling a bit better about things and Shelby got a FABULOUS report in clinic Tuesday.  The surgeon and her hepatologist are thrilled with her recovery.  Her spleen has shrunk about 3 cm in 5 weeks and her wbc and platelets have doubled.  Of course, that does not mean they are "normal" yet, but I have faith (and so do the doctors) that they will get there.  If all remains well, we go back in 2 months for another ultrasound of her shunt; if all looks good then, we go back in 3 months.  The doctors are very optimistic that this is really a GREAT thing for Shelby and now, having been through it, I feel wholeheartedly that it is, too.  I am very relieved that she *only* had to recover from surgery and that we are not having to worry about rejection and all the other complications that can come with transplant.  Not yet.  You're probably not ever "ready" for that until that is your last possible option.  I pray that this gives time for Shelby to grow, live and feel "normal" for quite some time before we have to head down that transplant road.  I pray that medical advances come along in that time period that allow for safer anti-rejection meds and that organ donation becomes more of the "norm" for people to choose to do so that the waiting list is not so long.  I pray for us as a family to look at Shelby's life in a new way; different than we have, especially the past 2 rough years.  I pray for Shelby to look at herself as a healthy kid who happens to have liver disease, not as a sick kid.  

Our trip to Chicago did not quite go as planned as my Mom was not feeling well Monday morning and was understandably not up for the trip.  Scott made several phone calls to find out if it was even possible for him to miss his first day of clinicals for this semester and found out it was o.k.  We headed into Chicago driving no more than 35 mph for the 1st hour, but made it in there safely on Monday.  We ate supper that night at Shelby's favorite, Bacino's, and stayed at the Kohl's House.  Tuesday she had an early appointment with Dr. Jill and then we dashed off to catch the train to catch the bus to the Aquarium.  That was a long trip, but we had about an hour to spend at the Aquarium once we got there.  We opted to just take a cab back to Children's so our travel time would not be as long.  The rest of the day was filled with clinic time and was zoo-like considering all 5 of us were there.  One nurse said to Scott "Oh.  I didn't know you had so many girls."  We headed home late, but made pretty good time and slept HARD that night.  

Shelby is back to school full-time and back to gym.  Her lower back pain gets less and less each day.  The hepatologist was impressed at how well she sat up after lying down to be examined.  We were told by the surgeon no high-impact sports (like sledding) until her spleen and platelets improve even more.  Turns out that had we consulted the surgeon on if her activity should have been restricted when we asked her hepatologist we would have gotten 2 different answers.  The surgeon is in the restrict camp and the hepatologist is not - interesting.  Phew - thank goodness nothing ever happened.  My girls are adrenaline junkies and play HARD.  Shelby can tackle an adult pretty darn good. :-O


Hopefully you followed along my rambling post good enough to get that we are all improving and plan on continuing to.  Please pray for Scott as he started nursing classes back up again this week and starts yet another "new" schedule at work.


Take care, everyone, and STAY WARM!


GO PACKERS!!!

Click on picture to see entire album

Chicago January 2011

Still hanging in there

Life is moving at its busy pace.  Its about to get busier, too, as Scott begins his spring semester this week, starts a new work schedule and (hopefully) Shelby goes back to school full-time.

Tomorrow my Mom, the girls and I will head into Chicago for a day of fun at the Adler Planetarium (free w/Discovery Center membership - yay!) and then the Shedd Aquarium (FREE day there! - bonus).  We will spend the night at the Kohl's House and Shelby will have a full day of appointments on Tuesday.  This will be the first ultrasound of her abdomen to make sure her shunt is still open (please pray specifically that it is) and to see her surgeon.  She will also meet with her beloved Dr. Jill and her hepatologist, Dr. Alonso.  Busy, busy, busy!   I have myself really pumped up that her labs are going to be so awesome so they better be!  Scott can't make the trip with us due to work and school so that's why I've recruited my (poor) Mom!  I told her to wear her walking shoes and take her vitamins! :-)   

I'll update again after our trip....

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.