Sleeping Beauty

Hi Angels!  We hope you are all surviving the summer heat!  Caroline has been staying in the A/C as much as possible!  As we have been crossing a few hurdles lately, I wanted to give you all a quick update and ask for some prayers.  For the past few weeks, Caroline has had a low heart rate and a low temperature when sleeping off and on.  In a diligent attempt to find what is going on with our little love bug, several tests have been run.  We started out with the cardiologist who sent us to the our breathing doc!  Breathing Dr. ran tests that all came back pretty normal, so he suggested an MRI.  Thankfully the MRI looks the same as it did back in 2012!  (Great news)  We also did some lab work to see if anything came up with her thyroid.... normal.  (I was kind of hoping for that one- easy fix)  Basically, so far we are at a loss.  I had to make a call to Caroline's surgeon at TCH today that I really did not want to make.  He was meeting with the multidisciplinary committee to recommend Caroline for her rod surgery.  This surgery was recently put on hold due to C's complex background.  Unfortunately, with the recent issues she has had, surgery is not a good idea.  Anesthesia is never easy for our girl and neither are pain meds.  We have no desire to mix the two of those things with an already low heart rate and temp.  As we work to find further answers, the Wleczyk clan is hanging close to home and soaking up some very precious family time since our time as a family of 3 is about to change!  :)  Any outings seem to leave Caroline extra tired and she is needing a longer rest period afterwards to recover from any unusual activities.  Even car rides seem to tire her out.  Although this post isn't my favorite to make, we are still having lots of great days mixed in!  Last week Caroline was awake and alert most of the week!  Today she slept until 2:00pm.  As i've said before..."this girl keeps us on our toes!".  We have decided to cancel all activities that require her to leave the house at this time in an attempt to give her the rest she needs and to give us time to try and put these puzzle pieces together to figure out what is causing her sleepiness!  What a blessing that we were able to go on her Make-A-Wish trip before any of this started!  Thanks for praying for our Sweet Caroline and her doctors and caregivers!  We are so blessed to have such a great team working with us.  We are looking forward to getting answers and being out and about again soon!

It's been a while.....

Wow!  I'm shocked at how long it has been since my last post!  I am happy to report that Caroline is doing great.  Since getting really sick in May, with the infection caused by her rods, she's been at the top of her game!  Billy and I were fearful that without the support the rods gave her, that she would be more susceptible to sickness, but thankfully our strong girl has proven us wrong. Last week was a busy week for Ms. Caroline.  We met with our ENT about if he thought taking C's tonsils out might help open her airway.  (BTW- I was terrified he'd want to remove them.). Dr. Duncan reported that Caroline's tonsils are not at all enlarged and that it would not benefit her to remove them!!!!!!  HAPPY DANCE!!!  We then met with the team at Texas Children's Hospital here in Houston to discuss putting the rods back in and basically doing a preliminary pre-op appointment.  Caroline is scheduled to get her rods put back in on Feb. 23rd.  We are happy to be moving our rod journey to Houston, where all of C's doctors are close and family is close too!  As surgery gets closer, we will be staying home and avoiding germs!  Thank you all for taking the time to follow Caroline and for continuing to pray for our angel!  

Home SWEET Home

Be Strong and Courageous.  Joshua 1:9

This verse is what we live by with our Sweet Caroline.  We have said many prayers for the very strong and courageous Lennon Walther over the past month, as we know many of you have.  God gave Lennon her special angel wings after a very tough battle with cancer. Please join us as we continue to send our prayers to her strong and courageous family.  Their strength is inspiring.  Their courage is inspiring.  Their undying faith is inspiring.  #liftinguplennon


Billy, Caroline and I were able to come home from TCH on Sunday afternoon.  There is truly NO PLACE LIKE HOME!!!  Although the doctors let us come home, Caroline still has lots of work left to do so that she can get back to being healthy.  Two years ago Billy and I decided to get C's rods placed to help with her breathing.  Due to her severe scoliosis, her organs are stacked on top of one another without the support of a strong spine to help her stay upright and give her body room for everything.  Without the rods, we are finding that she is much more comfortable lying down.  It is easier for her to take strong breaths and she seems to just feel better.  She has taken up residence in the master bed room, and it looks much like a hospital room, just cozier.  I cannot even begin to explain how happy I am that we are able to have so many tools here to treat her and not be exposed to all the germs there are in the hospital.  In order to come home, she had a PICC line placed in her right arm.  A PICC line makes it possible for us to give her IV antibiotics and do blood draws without poking her all the time.  As great that is, we have to be extremely careful to keep it clean and clear of any infection. In the past 3 days, I have seen lots of improvement.  It is very clear that she is happy to have Eva back!  The nurses at TCH are great, but she loves her Eva and trusts her.  We are working at taking breaks from her Cpap, which was only used at night when she had her rods.  When she is off, we are supplementing with oxygen so that she doesn't have to work too hard.  For the next month, while she has her PICC line, we will be camping out at home and avoiding germs.  Lucy is really happy about that! :)  In true Caroline fashion, she has everyone on their toes, just waiting to do anything she could possibly want!  She might not be able to voice what she wants, but she has her sassy ways of letting us know if we are making her mad!  Over the next 3 months (at least) Caroline will not have rods.  During this time, we will be working hard to keep her healthy, as she will be at a higher risk for pneumonia since her lungs don't have as much room as they do when she has her rods.  Once she is healthy enough to have them replaced, we have made the decision to continue our rod journey at TCH.  The doctor who treated her was amazing, and it was nice being close to family and friends in the med center.  Caroline has many factors that go into her care, and Billy and I feel that TCH is the place for us to be.  The staff in San Antonio has been wonderful to us, but sometimes change is needed, and being close to her pulmonologist and the infectious disease team, and the AMAZING Dr. Batchelor makes us feel more comfortable.  Our little lovebug continues to amaze us with her strength everyday.  Please continue to pray that Caroline keeps getting stronger.  #carolinestrong

Fight like a Girl!

It's been a roller coaster of a week for the Wleczyk crew!  Since my last update, we took Caroline to see her orthopedic doctor to see why she was in so much pain.  He was able to conclude that there was nothing in her hip that should be causing pain, which was good news, but it also put us back to square one... where is the pain coming from?  On Wednesday we came to the ER at Texas Children's to see if they could help us.  We got admitted and talked to several teams of doctors, and ran lots of tests, including x-rays, ct scans, ultrasounds, and lots and lots of blood work.  By Saturday morning I was seriously questioning my mommy gut instinct, and starting to believe I was crazy.  Just about the time that Billy and I were starting to wonder why we were still there, C spiked a fever of 103.  We worked all day to get it down with no luck.  On Sunday her temperature fluctuated, and some labs came back showing an infection in the blood (turns out it was a false positive).  Another culture taken of the wounds on her back from her last surgery did come back with bacteria too.  In the middle of the night, and the middle of the storm on Monday night, Caroline's temperature dropped to 96, and she began having some concerning vitals, so they bumped us up to the PCU so they could monitor her more closely until surgery the next morning.  When the doctors came to take C back for surgery, she was looking much worse than she had been and everything was less stable.  Needless to say, I was probably more scared than I have ever been.  To top it all off, Houston was under water, so the original Dr. didn't make it in to do the surgery and Billy was stuck at home.  Thank goodness Caroline did really well during surgery.  Dr. Phillips was able to make it to the hospital and assist in the surgery!  They washed everything out and removed the rods completely.  It is extremely difficult to get rid of infection when there are any foreign objects in the body.  The infectious disease team came by this morning and talked to us about one of the cultures taken during surgery coming back with a gram negative bacteria. (BTW- I am only repeating what I was told... I have no idea if I am spelling the correctly or if it makes any sense!)  Because of this, we are starting to talk about putting in a pic line.  C will be on IV antibiotics for a long time, and a pic line is necessary so that we can come home!  Around noon today the doc's extubated C.  She had a pretty rough time with the transition, but is now on her c-pap and a little oxygen!  We are getting closer to her baseline!  Every time I see her get extubated, I swear it takes 10 years off of my life.  Little Miss Caroline is looking much better this evening.  She hasn't run a fever for the last 12 hours and we are praying that her temp stays normal!  There are no words that are adequate to describe our appreciation for your prayers.  We can feel God's presence and can see him working through Caroline each and everyday.  Here are a few pics of our day in the PICU- looking rough, but happy!  :)

#carolinestrong

Wow!  I must say it has been way too long since I have updated our blog.  I have

set a reminder on my phone to be sure and update at least once a month!  I love

reading back on old posts to see how far we have come!  The last few of weeks

have been pretty trying for our Sweet Caroline.  She has been experiencing lots of

pain, so we went to San Antonio to have her surgeon take a look and see what we

needed to do.  Dr. Joshi was concerned that she may have an infection, but her

labs did not reflect that, so he sent us home to wait a week and re-do labs before

we decided how to move forward.  In the meantime, our crazy girl spiked a high

fever which made her heart-rate sky rocket.  Billy and I called the ambulance

because when C gets a high fever and a high heart rate, her breathing can become

unpredictable.  The docs at TCH decided she had a UTI, treated it, did some x-rays

and a CT scan & called Dr. Joshi.  We were able to come home and pack and rest

for a couple of days before going to San Antonio for surgery to secure her rods.

Since there was nothing leaning towards infection, our best guess was that her

rods just needed to be secured on more solid bone since they had been in the

same spot for so long (apparently this is not uncommon for rib kids, especially

ones like Caroline).  The day after surgery we met with another doctor who talked

to us about C’s hip.  Children with low muscle tone commonly have hip dysplasia.

An old CT scan showed us that C has had hip dysplasia for a long time, but it has

never caused any issues.  It seems to me that her left hip is what is causing all of

her pain though.  The doctor said that because her bone is not completely out of

socket, that the bones could be rubbing together causing the pain.  This makes

sense to me because the pain started after her last expansion, which shifted her

body.  He went in and made sure there was no infection and then gave her a

steroid shot to see if it helped.  The good news is that there isn’t any infection.

The bad news is she is still in pain.  We are dealing with typical post-op stuff, and

the pain associated with that, but my mommy gut tells me there is more to the

equation.  Our current game plan is to spend another week at home just resting

and giving her pain meds to keep her as comfortable as we can.  She is typically

fine unless we have to move her, so for a majority of the day she is great!  But

when she needs to have a diaper change or a change in position, she is pretty

cranky!  Once we make it through the long weekend, I plan to make an

appointment with our orthopedic doctor here in Houston to get a second opinion

on her hip.

We are always so overwhelmed with your kindness!  You are always asking how

our strong little girl is.  She is #carolinestrong! Thank you for praying for her, and

for us too.  When people ask about C, they always follow up with- but how are

you?  Billy and I are doing well.  We are of course aggravated, but we are

determined to get this all figured out and get our baby girl out of pain as quickly

as we can!

So- again, thank you so much for your prayers and your constant love and support

of our family.  Keep them coming, and please pray for our friends with struggles

far greater than ours.  May God put his healing hands on these families- The

McDaniel Family, The Jones Family, The Walther Family, and The Batchelor

Family.  And as you say these prayers, don’t forget to thank God for all the

blessings he has given us.  I know of lots of sweet new babies that have been born

recently, and I even got to hold little Miss Reese Ryder yesterday!

Big News!!!

Well Folks....  We have BIG NEWS!!!  Caroline went tee-tee in the potty FIVE (did you hear that?)  FIVE times today.  It is only our third day to use her new fancy, big girl potty and she is beyond a ROCKSTAR!!!  I'll be really honest with you guys, I really wanted to do it just to see if it was possible.  I thought she was getting it when I told her to go in her diaper, but I was also totally second guessing myself every time I got that "okay, whatever you say" look from anyone I mentioned it to.  I have prayed for so long to get a "loud and clear" response from Caroline on just about anything.  It took months for her to figure out how to cry just to let us know when something was wrong.  She still hasn't mastered what people would consider a typical smile to show pleasure (we are getting there), but in the last 3 days, God has given me the biggest gift!  No, not the fact that I haven't had to change as many diapers... have you ever lifted at 30 pound child that gives you no help on and off the potty?  Diapers might have been easier.  But God has given us the gift of seeing our BIG GIRL meet a typical milestone!  She is 3 and half years old, and I am in tears I am so ecstatic that she is REALLY doing something all her sweet little friends are doing!  She is absolutely cognitively aware of what is going on and how she is supposed to respond!!!  I am pretty sure that dang potty chair is going everywhere with us!  When you see us pulled over on the side of the road with a kid on a stand alone potty, give us a little honk-honk to show us how proud you are of our lovebug!  God is so good... even when it comes to potty time!!!

 

It's been a while...

Wow!!!  I had no idea it had been SO long since I have updated Lovebug's blog!!!  TIme flies when you are having fun!  I guess I should start by saying what a blessing it is to have had the opportunity to stay home with Caroline this year.  I sure do miss all my friends at work, and all the fun we had, but there is no place I would rather be that here with my boo!  I am able to be involved in all of her weekly therapies, attend all of her doctors appointments, and spend lots of quality time with C.  We get to go to the zoo and the park with several friends, and C has also started a Mother's Day Out program at the local church.  She really enjoys being with her peers, and her super sweet nurse Eva goes with her.  Eva took Melissa's place when she moved, and she has been such a blessing.  I am overwhelmed by how lucky we have been to have such wonderful doctors, therapists and nurses to be a part of our lives.  We finally got a diagnosis for Caroline in November, but it really didn't tell us much more than we already knew.  She has a very rare genetic disorder (only the third reported case in the world).  With that being said, we are still taking things day by day and crossing bridges as we get to them.  Caroline turned 3 last month, and is growing like a weed.  She had her first expansion surgery on her rods in her back, and other than a small set back with getting her breathing on track right after surgery, she did great!  She only had to stay in the hospital for one night!  Billy and I bought a new minivan to cart our precious cargo in, and I know you may find this hard to believe, but we really like it!  It is so much more convenient!!!  We have transformed our extra bedroom into a therapy/ playroom for Caroline so that we no longer have to carry her up the stairs, and it is a kids dream room!!!  She has lots of toys, music, movies and even a rocking chair to keep her comfy!  As you all know, we absolutely love the newest addition to our family... LUCY!  She is the sweetest puppy I have ever been around, and she absolutely loves Caroline!  She snuggles in her lap everytime she is sitting alone, and crawls under her bed every night when we tuck her in.  They are two peas in a pod!!!  Since I have been staying home, I have become involved in a Special Mom's Group in our area.  It has been such a wonderful thing for me.  We have such a strong bond and just totally "get" each other.  There is nothing like having someone to confide in that is going through the same things you are!  We get to celebrate all of the small milestones (which are BIG for our kiddos) and pep each other up when we need a swift kick to stay positive.  My weekly coffee with them is one of the highlights of my week!  As most of you know, Caroline has the most amazing angel that looks down on us from heaven now.  We sure do miss Poptart.  I thank God that Caroline was able to be a big part of his life before he was called home.  I will always hold those memories close to my heart.  We can't wait for the weather to warm up so that we can swing in her special swing he made for her.  Thank you for all being such wonderful supporters of our family.  We couldn't do it without all of your prayers and friendships.  We love each of you.  XOXO