Long day

Today was a long day for Claire.  She had a good night, but when we got there this morning, I could hear her crying down the hall.  She had thrown up a few times and was upset.  We all got her calmed back down and situated and she rested.  Her belly was really distended today and the doctor figured that the pressure was too high on the cannula and had put a lot of extra air in Claire's belly.  So they put the drainage tube back in her nose to get the excess air and stuff out of Claire's belly.  That seemed to help some along with pain meds. 

Claire was awake some but slept most of the day.  It's very pitiful when she wakes up.  She looks like she's in pain and cries.  Then she coughs and that really hurts her belly.  A vicious cycle. 

Rev. Berry and cousin Elizabeth and Ted came to visit today.  So did Dr. Rachel.  Claire has so many friends. 

Today was also the March of Dimes walk.  Unfortunately, Claire and I did not get to go.  But some great family and friends went anyways and walked.  I will post pictures when I get some!  We are so appreciative for everyone who helped raise money in honor of Claire.  Thank you!!!  We doubled the team goal and raised about $1000! 

Claire threw up 3 more times tonight, but when we finally left, she was sleeping soundly.  I am praying she has a good night.  They haven't fed her yet, but Claire doesn't act hungry and that's not like her!

I also got a beautiful basket of flowers for my first mother's day from Trent, Claire, and Fuzz!  It brightened my day!!!

We are all exhausted so sorry for the short post.  I hope I didn't leave anything out.  Please continue to pray.

Love,

The Scott Family




A good point in the day.  So glad to see her eyes today. 



Trying to clean out Claire's mouth.

Nurse Amanda - we love her!

Claire got a quilt from Quilts for Kids!

My mother's day flowers :)

I tried to smell the rose in the middle and the stamens from the lily left their mark on my chin!  I walked down the hall like this and didn't know it!!!!!  Geez!  A great end to the day!  haha

Claire's 7 month birthday and recovery updates

Happy 7 month birthday to Claire!  I hate that she had to spend it the way she did though.  Claire had a decent night last night and was doing ok when we got there this morning.  But the nurses and doctors said her left lung sounded a little collapsed or diminished.  They had not taken the ventilator out yet because of this. 

Claire was pretty sedated all day.  Anytime she opened her eyes, she was in pain and would try to cry.  Tears would come out and her little eyes would squint, but no sound could come out because of the breathing tube.  It's a very hard thing to watch.  And to know how much pain this little girl has to be in.  I haven't measured the incision, but it pretty much is a frowny face that spans her whole abdomen.  It goes from down near her right hip up over her belly button and down on the left side.  Plus I keep telling myself the child basically had 4 surgeries in one yesterday - a liver resection, 2 hernia repairs, and an appendectomy. 

So all day they nurse (a GREAT nurse) did physical therapy with Claire's chest which includes basically beating on her chest to break up the mucus in her lungs.  This has to hurt as Claire's incision is not too far from her chest.  But we understand it has to be done or her lungs could get worse.  She also received "muco mist" which is basically breathing treatments along with albuterol (sp?).  They started out doing them every 8 hours and then increased them to every 6 hours with albuterol every 3 hours.  The RT pulled a lot of mucus out of the breathing tube this morning and continued to get lots of fluid out throughout the day.

They got an xray of Claire's lungs around lunch time and it was not any better than the previous one even though they had removed a lot of fluid.  So the breathing treatments and chest PT continued.  Claire kept waking up in pain, so she kept getting pain meds.  She still has all of her 4 IVs and the drainage tube as well as a NG tube that is draining everything from her belly through her nose.  She did get the catheter removed today! 

The nurse only had Claire as her patient today so that was nice.  It's that way tonight too.  She spent a lot of time explaining things to us today like third spacing.  Claire is very swollen due to a 5-6 hour surgery, having lots of fluids pumped into her body, and having liver/abdominal surgery.  From what we understand, most of the fluid she has is in "third spaces" which is not helped by giving diuretics.  So until her veins absorb some of the swelling, she cannot get it out.  So they are working on that too. 

Although I thought the heart surgery was going to be the hardest on Claire, I was wrong.  This surgery has been much harder on her.  With her heart surgery, she was off the vent that night.  She came off a lot of pain meds quickly.   We saw the liver surgeon this morning and she said that she removed about 75-85% of Claire's liver.  That's a lot!  Also with the appendectomy, she should pass her appendix in her stool.  That is going to be weird. 

They did do an ultrasound of Claire's chest today to rull out a fluid pocket (she didn't have one) but we did get to see her "new" liver.  It looked so different without all of those cysts!!!

I was so tired last night that I don't think I said how thankful we were to Claire's liver surgeon.  She has been phenominal.  She is excellent!  I told her yesterday after the surgery I would hug her but that might not be appropriate! 

Oh, and a roommate of Claire from the PCICU was on the show "The Talk" today.  Her name is Korah and she is waiting for a heart transplant.  I will try to post a link to the show here.  Korah was there in February when Claire was there for her heart surgery and she is still there waiting.  http://www.cbs.com/daytime/the_talk/video/?play=true&pid=JjijFeSbwzMsAByu185i71Z3_5JNQZlv

The nurse from today stayed late tonight and called me when we were on the way to Julie's.  She told me that the extubation went well and that Claire was resting well.  They will keep watching her tonight and drawing labs and maybe do another xray to make sure her lungs stay open.  She may even get to eat tonight or tomorrow morning depending on how the night goes.  She has a really good nurse tonight too, so that is very comforting.  Today was hard for me to see Claire is so much pain. 

Thank you again for all of the continued thoughts and prayers.  We are so incredibly grateful.  Please continue them as Claire really needs them.  We are going to try to get some rest tonight.  We will see!

Love,
The Scott Family

surgery update 9:18 pm

Today was a very long, but good day.  We started out getting up at 3:30 am to feed Claire for the last time before surgery.  We then had to be at Duke by 6 am.  They called us back pretty soon and then we met with the anesthesiologists and the surgeon to go over the plan again.  They took Claire back to start getting her ready for surgery around 7:30 am. 

Finally at 9:25 am, we asked for an update since they were supposed to start around 8:30 am.  They had just started at 9:20 am.  The morning went by really slowly.  The only updates we got were that they were "still working" twice.  We saw so many other patients come and go while we sat there.  FINALLY at about 2:30 pm they called out and said they were closing Claire up.  Seriously, these were the only details we got all day! 

We met with the surgeon around 3 pm and she said the case went great and Claire stayed stable the whole time!  She was able to remove the big huge cysts on the right side of her liver.  Basically Claire didn't have any liver tissue on the right lobe - it was all cystic which we knew.  But the cysts were so big that they went from right under her rib to her pelvis according to the surgeon.  Trent asked if it was the size of a cantaloupe and she said yes.   This thing was huge to say the least.

Since it was so big, she had to remove part of the left lobe with the right lobe to make sure she got it all.  This left the small cyst on the left lobe.  But it is deep into the liver and not on the surface like we thought.  So to remove this cyst, it would take too much of her liver away that it might not be enough to function since she already had to take part of the left lobe with the right.  So the small cyst in the left lobe is still there.  This was disappointing because we can't completely relax.  We still have to be aware that a cyst is there and it could do the same as the other ones.  Or it could stay the same.  No one knows. 

She was able to repair both hernias without making a separate incision so that was good.  And she also performed an inversion appendectomy (sp?).  Claire's appendix was up really high.  It was probably displaced like her other organs from the cyst.  So to prevent it from getting infected in the future, she went ahead and basically did an appendectomy.  So that was good.  One less thing to have to worry about!  But the surgeon did say all of her other organs looked good. 

We asked how long it would take for her liver to regenerate and she said maybe just a few months!  So if by chance Claire did have to have the other cyst removed in a few months, she should have enough liver tissue that she could take it out and the liver still function.  So that was good news too. 

Claire then went to the PCICU since she is still considered a cardiac patient.  She is in the exact same bed space as she was when she had her heart surgery.  She even had a nurse that she had previously had so that was a relief.  Her nurse tonight seems good too and Claire is her only patient.

Claire is hooked up to a central IV (in her neck), an arterial IV (in her artery to measure blood pressure), an IV in each foot, breathing tube, NG tube to remove stomach contents, a drainage tube in her lower abdomen, an oxygen thing on her head and belly, pulse ox, and of course has her large incision.  The incision is in the shape of a big frowny face.  It pretty much almost goes across her whole belly horizontally. 

When we got to see her she looked good except her hands and feet were really purple.  They were cold but they said also she was a little dehydrated and her blood pressure was up.  Later on tonight, they looked a little better. 

They have been drawing labs all afternoon to make sure things are going well.  They increased her pain meds to keep her sedated a while longer since she is in a lot of pain and she needs to rest.  The cardiologist said her heart looks and sounds good!

Visitors today were momma and daddy, Granny, Grandma, Eliza and family, Remi and family, Rev. Berry, Amanda and Colby, Nurse Marie, Nurse Susannah, and Dr. Rachel.  Claire is so loved!  She also got lots of Facebook messages, texts, phone calls, and BBMs. 

Our prayers were answered and hopefully Claire can now move on and feel "normally" in her belly.  You can tell a HUGE difference in the way her abdomen looks.  I will post before and after pictures soon so you can compare. 

Follow up will be in about 3 months with an ultrasound with the surgeon and then go from there.  Hopefully the breathing tube and some of the IVs can come out by tomorrow. 

Thank you all for the thoughts and prayers.  God works miracles each day in our lives and we are so blessed. 

Here are a few pictures from the past 2 days!

having fun at pre-op appointment

first hotel stay

farm girl in my John Deere tractor outfit

getting ready for my surgery

with momma and daddy before surgery

Eliza came by!

So did Remi!  (the picture with Remi's mom didn't turn out for some reason)

Aunt Amanda stopped by before work

So did Colby!

so man wires and tubes, but resting well

Dr. Rachel and Nurse Marie came by too!

Nurse Susannah had to check on Claire too!

Love,

The Scott Family

surgery update 1:15 pm

They are "still working" at this point whatever that means.  We are hoping it means they are getting everything done they wanted to do. 

Claire's friends Remi and Eliza stopped by, but both Trent and I were gone each time they stopped in.  But Granny and Grandma were here and said they both looked GREAT!  Claire will be glad to know they stopped by to check on her. 

Love,
The Scott Family

surgery update 10:52 am

They started Claire's liver surgery around 9:20 am this morning.  We haven't received any updates yet.  The plan is to get the right side of the liver out first.  If everything goes good with that, then take out what they need to of the left lobe.  If that goes good, then they will work on the hernias.  I am praying they can do everything during this surgery - or at least all of the liver stuff - so they won't have to do another major surgery. 

We will be updating Facebook throughout the day and if we can we will try to update here. 

Thank you for all of the prayers and please keep them coming!!

Love,
The Scott Family

Pictures from the weekend

I bought a new pocket camera this weekend so I am trying it out.  I hope I like it better than the last one I had!

My belly is going to be fixed this week!  You can see how it sticks on on my right side and makes me uncomfortable.

Claire with Great Mimi and Grandma Neat Neat

Claire and Great Mimi

A fun post - to take my mind off this week!

I was tagged in a Stylish Award post on Ashley's blog, The Heath Family.  So to take my mind off of the goings on of this week, I thought I would play the game!  So this is a totally off the subject blog!

The rules to play are as follows:

1.) I have to thank and link back to the blogger who gave me the award. I did that above!  I love to read Ashely's blog about their daughter Mallory.  She is beautiful and I like to see what we have to look forward to with Claire!

2.) The next thing I have to do is share 7 things about myself that most people don't know.  Mine are not as good as Ashley's but here they are:


1.  Most people don't know that I read magazines and newspapers from back to front.  I am not sure why I do this.  Mainly I look at the pictures and don't really read anything.  So I guess if the picture catches my eye, then I may go back and read the article. 

2.  Most people DO know that I play with my hair almost 24/7.  It's a habit I have had from a small child.  It started out with twirling my bangs.   Then one day my mom cut my bangs really, really short so I would stop twirling them.  So then I just moved on to my hair!  When I graduated high school, the mom's put together a senior video of all the seniors with a little "message" or something about each senior.  Mine was "can twirl her hair and take notes at the same time."  I twirl with both hands when I am really stressed.  You may even catch me with it stuck around my ear as I type or drive.  It's all the time.  But, what you didn't know is that Trent has never said anything to me about my habit.  I guess he just loves it as part of me!  :)

3.  When I turned 30, I was devestated.  Acutally, when I turned 29, I started counting down the days until 30 dreadfully.  I started a list of "30 new things I have done while being 30."  And I was proud of myself that I did accomplish 30 new things that year.  Needless to say, I wouldn't have ANY problem having a "31 new things I have done while being 31" after this past year!

4.  I am addicted to chap stick.  There - I said it.  It started out in high school with Carmex.  I wake up in the middle of the night and put chap stick on.  I scared my college roommate, Melissa, one of the first nights of school when I woke her up while opening my Carmex container.  I sleep with my chap stick next to the bed.  I always have chap stick in my pocket.  I will have withdrawals like a smoker if I don't have chap stick. 

5.  I used to be really, really good about sending cards or notes and buying gifts for people.  But life has gotten in the way and I have fell down on the job in the past few years.  So I apologize to everyone for not being consistent!!

6.  I wasn't very sure about blogging.  I had thought about it when we found out about Claire's tetralogy.  But I just wasn't sure I wanted everyone to read my daily thoughts.  And I wasn't sure anyone would really care!  But when I went into preterm labor, my sisters started this blog and I am so glad they did!

7.  I hate to eat alone.  I would rather not eat than to have to sit at a restaurant or a cafeteria table by myself. 


3.) The final thing I had to do was tag 15 recently discovered bloggers to receive this Stylish Award. This is the hardest part for me because I don't have many readers!  If I tagged you & you wish not to participate, no biggie.  I was just trying to think of as many people as I could that I know how to contact who blog regularly & blogs that I enjoy reading.  :) I could only come up with 9 today!



1. Love, Laughter, and Something Else

2. Me, Personally...

3.  Mel's Blog

4.  Our Journey With Fetal Hydrocephalus

5.  The Amazing Adventures of Super Dude

6.  Mason's Journey - Our Boy with a Special Heart

7.  Bound by Grace

8.  Beauty for Ashes

9.  Grin and "Barrett"

10.

11.

12.

13.

14.

15.

4.) The final step is to contact these people to let them know!