I H-A-T-E cystic fibrosis!

UPDATE:  Ellie has RSV and cultured e-coli in her sputum again.  10 more days of antibiotics and fever control with Ty.lenol…they did say this would take a while to get over.  Fantastic!

Well, I hate the fact that Ellie and I both have CF for obvious reasons, but I REALLY hate it more for my little girl.

She is sick again!  Really sick!  So sick, that B is on his way to Texas Children’s AGAIN (the second time in 4 weeks). 

I called her CF nurse this morning and explained that we had taken her to the pedi on Friday b/c she was sounding wet in the chest and she was running over 103 fever.  The pedi has finally decided to treat Ellie like she is a kid with CF and be aggressive from the beginning.  B left with a Rx for azithromycin.  We have been giving her the antibiotic, mucinex, and pulmozyme for days and she is worse today that was on Friday.

She is such a super trooper when she is sick.  She rolls over to let us take her temp in the hiney, she takes all of her meds and even holds her own nebulizer when taking pulmozyme.  I just feel terrible that she has to go through all of this!

We try to keep Ellie’s life as normal as we can.  However, her immune system has proven to us that she absolutely can not handle being around ANY type of group activity involving other children. 

Knowing all of this we made a very difficult decision to home school her.  No mother’s day out, no preschool.  However, we have to make sure she is socializing and having FUN with kids her own age.  We decided to put her back into gymnastics because she loves it and it is a great way for her to get energy out.  She has been in it for 2 full months and been seriously ill twice. 

Our situation is a little different than other families with CF b/c it’s not just Ellie we have to worry about.  If Ellie is sick it is likely I will get the same thing.  My CF doctor is great about calling in an antibiotic for me as soon as Ellie gets sick, but there will likely be a time that we won’t catch it in time.  When mommy is sick who is left to care for the kiddos?  If mommy ends up in the hospital who is here to run the house?  Our situation is serious and it just plain sucks.  I can’t cuddle my baby when she is crying for me because I can’t risk catching what she has.  Both of our hands are raw from washing them 200 times a day.  We can’t ever share an ice cream or have a sip of each other’s drinks. 

This is hard…really hard.  It is even harder right now for B because I am a total waste that can’t even get out of bed without having uterine irritability and contractions.  And my baby is sick and I can’t be there for her.

I HATE cystic fibrosis and I HATE preterm labor.

On the bright side of things…I am 19 weeks today and if Cullen is still growing like the jolly green giant he is closer to 21 weeks!  Now that doesn’t mean we are really any closer to viability because we need his lungs to be more mature that the size of his body, but he will at least be a big boy which should help him out should he arrive earlier than he should!  Six more days until our next BIG doctor trip!   

Until then…

You will keep him in perfect peace, whose mind in stayed on You, because he trusts in You.

Isaiah 26:3

Blessings,

Angie