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Friday, May 21, 2010


Ben and I had a somewhat unexpected trip to UCSF yesterday. It all started a couple weeks ago when he started coughing. I chalked it up to our new eflow system because the medicine is different in the eflow versus our original neb. The new medicine is more concentrated and is delivered faster so I figured that had something to do with it. Well, the last couple days, his cough has gotten worse so I called our NP yesterday and told her what was going on. She called me back after she talked to the doctor and said they wanted us to come in the next day.

She had me worried at first because they know how far of a drive it is for us and usually suggest us coming in as a last option. I like to mentally prepare myself a few days ahead but I have found that my GPS system and a Xanax, have greatly cut down my stress level on clinic days. I think it’s because driving in the city is so hectic. People are cut throat and ruthless and will run  you over if need be.

We got there with a few minutes to spare so I let Ben run around the building for awhile. It’s hard because he’s been sitting in the car so long but the last place I want my CFer playing, is the waiting room of a hospital! Our name was called and we went back to get our stats taken. Ben weighs almost 28 pounds! That puts “Fatty” comfortably in the 90th percentile! I can’t say enough how many people commented on how cute he is and how well he is doing. All I could do was nod  my head and say how blessed we are.

Dr. N listened to his lungs, which sounded clear, and then asked me our routine. He came to the conclusion that Ben might be having a bronchospasm from his TOBI med. Could be from the eflow, may not be. So we are now on Xopenex through an inhaler/spacer. The Xopenex will help open his lungs so the TOBI can get into the crevasses and should stop his cough. Luckily Dr. N realized how much energy Ben has (as Ben’s trying to push him around on his rolly dr’s chair, ha) and said that we can do an inhaler versus a neb treatment. Right now we vest for 30 minutes then go into our TOBI treatment 5 minutes later.  So halfway through our vest treatment, I’ll have Ben take the inhaler. It takes 20 minutes to go into full effect so it should be full strength by the time we get to our eflow. It will also help open his lungs during vesting to get everything out.

The drive home was a lot harder, we left during prime traffic time. Luckily, Ryan had dinner handled so Ben and I were able to eat as soon as we got home. Thanks babe!

Here is a picture of our new inhaler/spacer.

Ben will have a mask on the end of his because he can’t inhale the medicine directly from the spacer. It will fit on his face just like his mask for our TOBI treatment.

The Dr. also took a throat culture so we’ll see if he has anything new growing. If not, we’ll see how things go with the Xopenex then go from there. I’m glad we went in yesterday because we leave for Hawaii in 3 weeks and we need to get this figured out before hand. I’d hate to leave Ben behind….. Just kidding!!


  1. Good luck with the spacer Ben! :)

    The Xopenex helps Lucy SO MUCH (especially during the spring months with allergies and hayfever), but she does her Xopenex via nebulizer while she vests (before Tobi and Pulmozyme). I could never understand it, but Lucy was always afraid of the spacer! I even let her decorate it with stickers, but she would scream when I tried to use it. She was really young when we first tried, and now the nebulizer routine we have down perfectly.

    I really hope the Xopenex works for your heavy weight! It has always helped Lucy during a coughing or wheezing fit, too, opening up her lungs more. We use it whenever necessary, not just during vest time! :)

  2. He'll do great. I remember when we were using the spacer with Albuterol the RT would prefer Nathan get upset because he would REALLY inhaled deeply. He got the hang of it but I still prefer the nebulizer since it is soothing and alot more difficult for him to try to hold his breath for the duration. Good luck, Ben!!

  3. The problem could be that you're using the normal TOBI drug in the TRIO. This will deliver too much medication to his lungs, which would cause the effects you are noticing. You can have your pharmacy compound tobramycin for use in the TRIO. This will be a lower dose and should be easier on the lungs. Hopefully this helps!


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