Follow-up

We went back today for Kelsie's follow up appointment. She has been doing well and her cough has essentially gone away. The cultures did not grow any bacteria or viruses so NO INFECTION in the lungs. Very happy about that! So we are now able to stop the antibiotic.

Her weight was up slightly from last week - like 2 oz - but it is still down from where she was 2 months ago so we are going to have to work hard to get that back up. She weighed 26 lbs 9oz today and was 26lbs 13oz on Oct 13th. She's still at or slightly above the 50th% weight for height and they like to keep their CF kids from falling below the 50th%. Kelsie is still eating really poorly but we think that might be coming from constipation so we are going to ramp up the Miralax a little more and make sure we are getting everything cleaned out. We also had long discussions with the nutritionists about how to manage her meals/snacks, new ideas for getting her to eat, and implementing supplements such as Pediasure. She has hit a picky phase of eating which is typical for all toddlers, but with her, we have to more aggressive about it. The Pediasure will help fill in the gaps and give her 100% of what she needs in a meal. So if she goes a whole meal and refues to eat, we can rest a little easier knowing that she is getting the fat and protein she needs from the Pediasure. We are also going to keep trying things like distraction to get her to eat, adding more fat to her diet by adding butter and/or heavy cream where we can, and giving less juice (low calorie beverages) and more milk based drinks (even if that means giving an extra enzyme when her meal or snack dose has ran out).

We are also starting a new therapy called hypertonic saline. This is like really salty water that she will breathe in through a mask for 15 minutes twice a day during PT. they did a "challenge" to make sure she could tolerate it. She did ok in the beginning but only made it a couple minutes before she started pulling it off and fighting it. It causes the airways to spasm causing her to cough. So she has to take albuterol first to keep her airways open so her breathing won't be compromised by the spasms. The salty solution helps balance out the sodium chloride and water transfer which is the foundational problem of CF. This has been shown to be a beneficial preventative measure in people with CF by helping to clear secretions from the lungs. I don't think it took Kelsie long to realize that she doesn't like this new therapy. It causes the nose and throat to burn and makes you cough. Doesn't sound too comfortable to me! They say it will take some time for her to get used to it and we will have to slowly work up to our goal of 15 minutes twice a day.