Wednesday, January 7, 2009

Clinic Update - January

We had Clinic today and were kind of expecting it to go as well as they have been at the last few.

Let's start with the lungs.

  • The doctor we met with today informed us that Olivia started growing pseudmonas in her last sputum sample (I'm not sure if it was from the Salmonella ER visit or last clinic), which she has never grown before.
  • They took another sample today and depending on the results she might be getting another bronchoscopy, then depending on the results of that placed on another PICC line.
  • They aren't sure if the pseudomonas are growing in her airway or lungs (yet) so they decided to start her on TOBI.
  • Her Hypertonic Saline was changed to 7% and twice a day, so we had to get a second nebulizer so that daycare could help with the treatments (which they have told us they will gladly do).

Now onto Digestion.

  • They want her Creon 5 increased to 2 before each meal (she currently takes 1-1.5 depending on the size of meal).
  • They increased her Miralax so that she doesn't start cramping, getting gas and/or constipated with the change to her enzymes.
  • They want her solid food intake increased, but that's a slow process since she's just gotten over the Salmonella.

The Respiratory Therapist and Physical Therapist gave a thumbs up.

I'm a little down from the news. Our Clinic has a started a Parental Advisory Committee (that we signed up for) and the first meeting is tonight. I don't know exactly what we'll be doing, but maybe I will be in better spirits after.

3 comments:

Katey said...

Praying the psuedomonas is not in the lungs! I hope all the new medicines, etc. help! I guess its hard when you are an "experienced" CFer and the word psuedomonas is so common that you don't think twice about it. But I guess it is difficult to a newly diagnosed CF patient and especially the family. All will be ok!! Promise!

Alicia said...

Bummer. I'm sorry. Please post what that meeting is like-I'll definitely read about it!

Phoenix's Mom said...

Sorry to hear the news. You are doing an amazing job, Olivia is a very lucky little girl. I know I cried when Phenny first tested positive.
Keep your chin up these amazing kids are resilient.
Sending prayers and Hugs!
Angela