If you've been keeping up with Meaghan, you've been waiting for some answers.  Today during our 3 hour long visit to clinic we learned a lot.  Some good news and some not so good.  I want to share the good news first.  At the appointment on November 21st the throat culture they took came back negative for pseudomonas.  So all the questions I had about whether or not I did the right thing subjecting Meaghan to the hospital stay and IV therapy were answered.  It worked this time.

They took a new swab today, because they have to and also because of all the illness that has been going on in our house.  Today the doctor believes that Meaghan has some viral stuff going on in her upper airways and in her gut too.  He was not comfortable treating any of these things today because of how many medications Meaghan is currently taking and the likelihood that she'll be restarting the nebulized treatment for pseudomonas.  Jason reminded me to take the small victories we are given and congratulate Meaghan for all the hard work she put into getting rid of the "mean bug".  On the car ride home Meaghan said to me, "Yea, 'cause taking all my medicine is easy.  Being CF is hard so I just have to do it."  Yep, she said "being" CF.  I didn't ask, I could barely stomach the talk we were having as it was.  From there she went to spend the afternoon with her friends at preschool.

During the visit the nutritionist came to talk to us because of the weight Meaghan is losing.  We haven't done that since her G-Tube was placed almost 5 years ago.  Many of you who know Meaghan already know that getting Meaghan to eat is our greatest challenge.  It has been ever since her G-Tube was placed.  Don't get me wrong, she NEEDED the surgery, I am not second guessing that decision.  But, she hasn't regained her appetite and we've tried lots of things.  So today we met with the behavior psychologist.  Mostly she couldn't help, we've been practicing a lot of the things she had to suggest at home already.  I did take away one thing to try.  Each day Meaghan is challenged to try one new food item at dinner with the family.  For each "real" taste of new food she earns a sticker to add to her very own new calendar.  After she earns 5 stickers she gets a special reward.  Meaghan is excited about the whole process and she earned a sticker tonight.  She tried (3 licks of the spoon) greek yogurt.  She didn't like it but that isn't the point.

Meaghan toured the Pulmonary Function Testing room today.  She couldn't practice today because she isn't "healthy" enough but we're working in that direction.  It will be very helpful to measure Meaghan's PFT's because she hasn't been a kid to cough or show symptoms of illness, even though she's been very sick.

Lastly, the nurse brought in some new equipment to show us.  Meaghan's old equipment takes up to 30 minutes to deliver one treatment and she has to do them twice a day.  The new equipment and treatment take two minutes and get done three times a day.  The first medication we used has to be spaced 8 hours apart but the new one isn't so time sensitive.  They are equally effective at treating pseudomonas.  So, when we have to start treating her again we're going to try the new option.  There are a few different ways of looking at pseudomonas.  It is the number one cause of permanent lung damage in cystic fibrosis patients.  Early detection and treatment are essential.  Those things my family accepts and agrees with.  Now that we have successfully eradicated it once we want to keep it out.  Realistically, that is highly unlikely.  Some believe we should use the nebulizer treatments daily to stay ahead of the infection.  There are few, if any, side effects with the nebulizer and it could prevent the infection from sticking again.  It sounds simple, right.  She's just five.  I would love to lighten up her load and free up more of her time to play like all the other five year olds she knows.

Reality stinks.