I am the mom of a 10 year old son with Cystic Fibrosis (Ty) and an 11 year old son without CF (Bran). This is my journey as I balance Ty's needs while giving Bran the love and attention he deserves.

Tuesday, June 29, 2010

What about the healthy child?

Brandon is my 10 year old (going on 30!).  He pretty much stays healthy all the time.  I honestly cannot remember the last time I took him to the doctor for being sick.  It was probably back in the toddler years.

I have taught Bran from a very early age to be independent and responsible. As a single mom I had my hands full with just managing Ty's CF.

As Bran gets older he makes it known that he is still a member of this family. A big one for Bran is that I need to spend time with him because I spent the day with Ty at the CF clinic.

As a general rule, Bran gets why I focus so much attention on Ty but that doesn't mean he has to like it.  (He just whispered to Tyler to get started on his medicine before I start yelling. Ha! Ha!).  We acknowledge and address his feelings and I encourage him to have an open dialogue with me about what its like to be the "healthy child" in a CF family.

Recently we were in the hospital for more than a week and it really hit home for Bran. He genuinely missed his brother and was quite concerned about his health. He even told me that he felt bad for Ty having to get so many shots.

I'll leave you with a perspective from someone who has CF and mentions how it must have affected her "healthy" brother growing up (Check out Stacey Bene's Confessions of a Cyster):

One thing that still makes me sad about this period of time is all of the time my stupid disease stole from my brothers life...this equated to him being unintentionally ignored much of the time. Everybody always said how great Jason was at entertaining himself. Honestly, I don't think he had a choice. There was only so much attention to go around. My parents did nothing wrong...I just took a lot of time and attention to care for... Honestly, it must have really sucked for him :-(
 Now its your turn, tell us how you deal with the issues that come with having both a healthy child(ren) and sick one(s).

Monday, June 28, 2010

Flash Me! Friday

Yep! You're looking at this correctly!! I'm posting a "Flash Me! Friday" on a Monday. The Groettum Family  came up with a really neat idea to take a picture of their choosing (here's the catch) without any cleaning up whatsoever! Wow!  That's scary! But I'm GAME!!  If you would like to do the same, check out the rules here.

This week’s flash…
Show us where you kick your feet up and relax!

This is our living room.  As you can see we have all white walls.  It is driving me crazy.

We've had the house for about a year and I'm ready to paint.  I was thinking of a burgundy accent wall where the window is and the other walls a light tan.

What do you think?? Give me some suggestions!!!!

Putting these pictures up makes me realize how BARE the living room is!!  Wow!

Color is the spice of life!  I need to get busy! 

What's up with all those cords?

Hey Tyler, why are your shorts in the floor?? 

So there you have it!  This is my daily relaxation spot!  I don't have the fabulous view that Mandy has over at

That's okay, I can just hop over and see her view from my computer screen!!  

Sunday, June 27, 2010

My blog...

is officially underway.  Wow!  I have much respect for everyone's pages now.  Designing these things are a lot of work when you have no clue what you're doing!  Well, there's no time like the present so shall we begin??

Tyler has had pneumonia since November 2009.  He woke me up screaming around midnight one night.  I thought he was just having a bad dream.  I went into his room and he was laying on his side.  He wouldn't move.  I assumed his stomach was hurting because he has so many tummy issues, but he assured me it was his side.  He was in so much pain and I didn't know what to do so I told him I would take him to CMC-Charlotte.  The ER was unbelievably easy and hassle free.  The ER doc immediately diagnosed pneumonia and put in a page to the on-call CF doctor.  To both of our surprise, we weren't admitted and was instead instructed to follow up with the CF clinic on Monday.  We did oral antibiotics for the next two weeks and was told our next appointment would be in 3 months.  I politely asked how we could be sure that the pneumonia would be gone in 2 weeks without a follow-up. So to ease my mind we were given orders to get another x-ray and bring them with us in 2 weeks.  The x-rays revealed that the pneumonia was even worse.  We went in to get our 1st PICC line and did home IVs (5) times a day for the next 3 weeks.

A month later we were back in the ER with the same symptoms once again.  This time Ty had strep throat and  again pneumonia.  Once again we followed up with the CF clinic on Monday.  During our visit  the doctor was heavily considering that we go into the hospital for a tune-up.  He said he would check on a few things and be right back.  When he came back he acted like everything was perfect, that Tyler was where he needed to be and he would see us in 3 months.  We were shocked.  Disbelief.  Did that just happen? Within 2 days Ty was once again screaming with side pain.  I called the doctors office and we were told to follow up with our Pediatrician.  You want me to do what???  Needless to say, the pediatrician's office repeatedly said we had to call the CF clinic back since it was pneumonia (and CF) related.  I finally had hem talk to Dr. Thevaos (we love you!!) and he agreed to see us. 
That was my final straw so we moved our care to the CF clinic in Chapel Hill, NC.  So far we have been totally blown away with the care that we've received.  We found out things we never knew, namely that Ty has polyps in his nose and that he cultured things I have never heard of.  We were given another PICC line and really high doses of antibiotics (Vancomycin, Ceftazidime and Septra) to combat the pneumonia, MRSA and pseudomonas.  Ty kept getting sick on his stomach and wouldn't eat, so we moved him home where we're doing 7 IV's a day, 8 breathing treatments and 60 minutes of chest therapy.  We go back to Chapel Hill on Thursday.

PFTs went from 62% to 59% (pre IVs), to 78% and 83% (during IV's).  Let's pray for even higher numbers on Thursday! 

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