Monday, July 30, 2012
CF check up tomorrow!
Lexi goes to UNC tomorrow for her check up. Please keep her in your prayers. :)
Monday, May 7, 2012
The results are in.
Well the results are in...and the news is good:) Lexi's upper respiratory cultures came back pretty good. She has some Staph and mold growing...not good, but not new either. She often has both of these in her lungs at any given time. This is wonderful news that she isn't growing anything strange...but it still doesn't explain Lexi's persistent cough.
The doctors have decided to treat with Refampin and Septra for 4 weeks to hopefully take care of this crazy cough. Say a little prayer each day that it will.
The doctors have decided to treat with Refampin and Septra for 4 weeks to hopefully take care of this crazy cough. Say a little prayer each day that it will.
Monday, April 30, 2012
Cough, Cough, Cough...
Please keep Lexi in your prayers. She has struggled with a minor cough since Febuary. We have tried to wait it out, hoped her inhaled Cayston would help, and finally completed a three week course of Septra. None of these things worked, infact her cough seems to have worsened some:(
We go to UNC tomorrow for an unscheduled check up. Please pray that all goes well. CF can be so confusing. I am never sure if her cough is common and to be expected...or something more.
Thank you:)
We go to UNC tomorrow for an unscheduled check up. Please pray that all goes well. CF can be so confusing. I am never sure if her cough is common and to be expected...or something more.
Thank you:)
Monday, February 6, 2012
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!
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!
Monday, December 19, 2011
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!!!!
Thursday, December 8, 2011
Wednesday, December 7, 2011
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.
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.
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