Tuesday, May 31, 2011


I would like to share a little bit about what our days are like with a child who has CF - not as a bragging point (so please don't think that), but to help educate and offer a little perspective.  I certainly never thought a ton about many things that we've been through.  I certainly was aware of them, but sometimes you don't realize the full situation until you've been through it.  Ok, stepping down off the soapbox.

Our days are pretty structured, and there are many things that have become routine: Judith gets lots of play time/interaction time, but she also has new therapies and medicines that need to be squeezed into the day.  She takes an iron supplement daily (that's for the prematurity, and I'm hoping we can wean her off of that in the near future), along with a special vitamin designed for people with cystic fibrosis.  I honestly don't know which was worse: the smell from the Poly-Vi-Sol with iron that she was on from the beginning in the NICU, or the smell from the "cherry flavored" Vitamax that she now takes.  Oh.my.goodness.  It's more like rotting cherries or something equally as gross!  I am SO glad that I can put it into her bottle of formula and give it to her that way, because I doubt she'd take it otherwise!  Blech!

She's still on the Zantac for reflux, and the only thing that changes with that is the dosage - they usually have to increase it once she reaches a certain weight so it continues to be effective.

Twice a day, we have to do 2 special things for her CF.  Judith has a maintenance inhaler (Albuterol), and gets 2 puffs at each dosing time.  She does pretty well with it - most of the time, she'll cooperate and will even "talk" to me through the mask of the spacer (she's been known to lick the valve where the inhalant comes out...), and there are times when she fights taking it.  The other thing we have to do is chest physiotherapy, or CPT (or chest PT).  This is an important therapy to do: it is the one where we clap the mucous out of the small airways in her lungs and move it to the large airways so she can cough it up.  In a person with CF, the body makes abnormal mucous, and it tends to be thicker and stickier.  If it remains in the small airways, infection can set in and cause lung damage.  Clapping it to the large airways helps the person with CF cough it out of the lungs, therefore helping to reduce the risk of infection (granted, infection can still set in, but it's a good preventative measure).  It takes about 24 minutes to do the actual therapy, but can take us up to a half hour to complete it if Judith is really fighting it.

Right now, we can escape the adventure of adding digestive enzymes to every meal she takes, because her pancreas is functioning normally.  Knock on wood that it continues to do so.  They will monitor this and check function every so often.

Everything goes smoothly, and it really doesn't take a lot of time to do.  We have a board to keep track of everything, but I'm at the point where I can generally remember dosing amounts, etc.  It was super overwhelming in the beginning, but just like everything else we've encountered, we're learning to adapt.

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