A post from another CF parent...

This is a repost from another cf parent.
Some thoughts from us parents of CFers ... this is exactly what it’s like.... There are so many people that have no clue how lonely CF can be and how hard it is to be a parent and yet be so powerless! It is like you are standing by a lake and watching your child struggle to stay above water and you have no idea how to swim!
We live every day hoping for a ...cure. We live in fear that our children won’t live long enough to experience it. We watch our kids take pill after pill and medication after medication every day. We do physiotherapy treatments which include nebulizer treatments several times a day. We give our children 15 different medications each day and that’s when they are well. When they are sick they are in the hospital for at least 2 weeks on IV antibiotics. We watch our children scream as they get held down poked and prodded by the staff there. We watch the tears run down their faces as they look at us as if we are the ones hurting them.
Our children develop bacteria that take over their lungs. It makes them work so much harder to breathe. It makes their lives shorter than they already are. Our children have an over abundance of mucus in their bodies, it overtakes their system. Some of our children cannot run around all day, they get out of breath easily. Even though our children are so sick, they always seem to smile even at the hardest times.
We listen to the comments from people that think our children “look” healthy, therefore they must be fine. But yet their lives are withering away right before our eyes.
We get dirty looks from people when our children cough so bad that they vomit. Our children are not contagious. We stay awake all hours of the night listening to our children cough so hard that they can’t even get a breath in between the spasms.
We stay in the hospital holding them, waiting for them to get better, hoping that they aren’t too weak to fight. We live in fear because we know one day our children will get sick and won’t get better. We pray it won’t be this time.
We watch families we know lose their children to this battle. We pray every day that we never have to go through that pain that we won’t have to hold our children until they take their last breath. We hold on to hope even when things seem impossible.
We sometimes feel useless. We fight everyday with our children, right by our sides in the hope that we will not lose this battle. We keep fighting for our children. We stay strong for them. We are the parents of a child with Cystic Fibrosis

Our Biggest Challenge is NOT resenting Cystic Fibrosis, BUT learning to live with it!

Happy Birthday Lexi...

Eight years ago today, God blessed us with His miracle.  At this very moment eight years ago, Lexi was in surgery and God was guiding the hands of the Pediatric Surgeon that would save her life.  Lexi had an intestinal blockage that had ruptured.  Dr. Pence spent hours cleaning and searching for enough intestines to save her little life.  But what he didn't know was that God had a plan.  God knew before any of us that Lexi would be special.  You see, the Devil tried to take her from us...but oh no!!!!  God knew Lexi was special to Him and everyone that would meet her.

My prayer is for Lexi to continue to allow God to lead her life.  To guide her in every decision that she will make.

Happy Birthday my sweet girl!!!!

My sweet Angel.

Some pics of our recent hospital stay...

We are Home!!!

Praising the Lord that we are home.  We were discharged last night and I am pretty sure I got less sleep here than at the hospital...but doesn't matter...home is great!

They were unable to get a home health nurse to come out to the house until tomorrow (Thurs), but b/c we are IV experts...we could come on home.  I don't mind being called an expert in anything...but in giving her child IV meds....not so much.

Her dosing schedule is 4am, 12noon, and 8pm.  The infusion takes 2 hours...so no sleep for the weary.  But that is ok...cause this is gonna make little Lexi well.

Her poor little arm is still in terrible shape.  We had to change her bandage today b/c it was coming up on the edges and her sores had some drainage that made the bandage wet.  It was one of the most awful experience ever!!!  Lexi screamed, cried, and begged me to stop.  She was in so much pain that she was  twisting the sheets in her other hands and at one point was pulling her hair.  IT WAS TERRIBLE!!!  She was saying ouch, ohhh, Mommy please stop, it hurts so bad.  I am terribly heart broken.

I have been really emotional this time for some reason.  I cried at the clinic visit when they told us we had to go in, I cried as I left her as they put her to sleep, I cried when I saw her on oxygen in the recovery room, I cried on the way home last night, and of course today as I changed her dressing...sheeww.  I will be glad when this is over.

Day three..

Praising the Lord for a great day!  We had a wonderful night sleep, which makes everyone so much happier during the day. :)

They did come in last night and completely stop her Vanc.  This made me worry a little.  The doctors have never stopped her antibiotics, especially in the middle of a dose.  But they did start it back at 4am this morning.  Evidently her levels were way too high:~/

Aunt Stacy and Uncle V came to visit today and brought lots of goodies and snacks.  They stayed about 5 hours which was wonderful.  Gave me a break from having to entertain and really made Lexi's day.

The doctors came in today and said Lexi's lungs sound good.  Hopefully the cleaning they did during her Bronch will make it much easier for the antibiotics to work.  They will also get the wound care team involved with her PICC line care.  Lexi's skin is sooo sensitive that the PICC line dressing breaks down her skin.  They are hoping that getting them involved early will help keep her skin from blistering soooo bad.  The doctors are also going to get the surgical team to come by and talk to us about putting in a Porta cath for Lexi...way nervous about this.

Tonight we were able to unhook Lexi from her IVs for a couple hours.  We took a bath and changed clothes...this was wonderful!

Lexi's arm that her PICC line is in has started to swell some.  We had to page the doctor to come by and look at it.  He ordered an ultrasound for the am thinking there may be a clot or some infection brewing.   We shall see.  Prayers please.

Love you all:)

Day two...

Today was a good day.  Lexi's appetite is good and she seems to feel good.  The doctors said this am that her lungs sound good.  We are just hanging out waiting for her culture results to come back and her antibiotic levels to safely be where they need to be:)  I must say again, how wonderful the pediatric staff is at UNC.  They are so patient and kind...love them, and they all kinda think Lexi is special.  Familiar faces come by to see her when they find out she is here.

We did have a restless night...The nurses came in pretty often to check her vitals and the baby next door cried alot.  We are praying for a better night!

We were able to get rid of her oxygen and heart rate monitors during the day.  They also pulled her IV after they were able to draw her blood from her PICC.  Now we are just down to the one line.  Praise the Lord!!!

They also did the first dressing change today on her PICC line.  Lexi was so brave.  Hoping no more changes for 7 days. 

Have a good night, and thank you for all of your calls, texts, msgs, and most of all prayers.

Day one...

Lexi was admitted to UNC children's hospital for a Bronchoscopy, PICC placement, and to start IV antibiotics. 

We came in today because the doctors were not satisfied with exactly what is going on with Lexi.  Her white blood cell count was elevated, the doctors could hear some crackles when they listened to her lungs, and her chest x-ray did show some linear changes.

They are sooo wonderful here and make the kids feel so comfortable.  They let me go back to the operating room with her until she went to sleep.  They gave her an inhaled medication...so no ouchies until she was asleep.  They even put scented chap stick in the mask to hide the foul smell of the medication.  I held her hand with tears in my eyes as she fought to pull the mask off.  She calmed down as the meds took effect, and then she closed her eyes.  It is the same every time, but it doesn't get easier.  I then kissed her and left her in good hands...

The bronchoscopy only takes about 30min.  They go down her throat and into her lungs to look and get sputum samples.  The doctor said that there was a lot of infection and thick mucus in her right lung.  He said it was a little worse than her last Bronch.

The PICC team had a hard time getting a line this time.  They had to stick her 3 times before they could get the line fed into her arm.  It seems to get a little harder every time...but they got it and that is what counts.  We may even talk about giving her permanent port in her chest while she is here:(

I was thrilled when they let me go back to see her in the recovery room.  It seemed like forever, and her sweet face was the most beautiful thing.  She had a little harder time waking up this time.  They had to give her oxygen, which was different this time.  That was hard to see.  We tried to wean her off, but her little lips turned blue, so back on the oxygen we went...sheww.  She finally ate and was able to completely come off of the oxygen.

We are now in a room and about to get her antibiotic started and hopefully have a wonderfully restful night.

Thank you all for your thoughts, messages, and prayers.