July clinic visit

As I said in my last post, our visit was okay. Ben was crabby and I had a lot to discuss with the doctor so it made for a long day. We got through it though and are now waiting on our shipment of HS to start our new regiment.

We decided that Ben needed some help in getting the mucus out of his chest. The first idea brought up was Pulmozyme. However, I had some reservations about Pulmozyme. There are not longer term studies on the effects of the drug in children under 5. I had hoped we could do something more “natural” like Hypertonic Saline. Luckily, Dr. N seems to favor HS over Pulmozyme and thought that was a good place for us to start. Hypertonic Saline is just extremely salty water that Ben will inhale through a nebulizer. This can be done while he is vesting. The solution helps break down the mucus so he can better cough it up. We will start off at a minute, having him inhale the HS. From what I’ve heard, it’s extremely hard to take a first. It makes you cough really hard and can irritate the lungs. All good things but they will need to be introduced slowly. Especially on a little guy like Ben.

We will hear the results of his culture today or tomorrow. Not sure of where we will go, we need to wait to hear the results to make a final decision.

Ben is feeling almost 100 percent back to normal . However, he does seem to be clingy lately. He has been going down for his  nap earlier in the day and that seems to be helping. Could be more teeth coming in. We’ll just have to watch and see.

I do have a question for other CF mom’s out there with kiddos on HS. How did you first introduce it? Did you slowly work up to 20 minutes? Any advice? Thank you!

Click HERE if you’d like to read an article in the New England Journal of Medicine about HS in CF patients. Very informative!!