Today respiratory therapy came to teach me about what I will be doing with Ruby once we go home. YOWZERS, is all I have to say. She told me she would be here for 1.5 hours and our teaching lasted 3 hours. I was a little frazzled by the time she left and all I can say is I felt overwhelmed. First she taught about the inhaler (luckily she's been on that forever), she will be on flovent and albuterol, 2 puffs twice a day. She taught about using the spacer, cleaning the equipment, teaching Ruby how to use the mouthpiece vs the mask. Next she taught about all of her medications she will be receiving through a nebulizer. She'll be on hypertonic saline 2x day, pulmozyme 1x day, tobi (inhaled antibiotic) 2x day. Each of these take 10-25 minutes to do. They have to be done in a specific order. None of the medicine can be given together or even poured in the same device, so I have to have three different nebulizer devices for each treatment. All the nebulizers need to be sterilized between treatments.

They discussed the vest systems and made me decide on which one we want at home. We tried all three systems. I feel like I'm buying a car. It's a huge decision, they are expensive and the one I choose will be the one she has to use everyday. What if she hates the one I choose? I hated making that decision on my own. There should be a panel of other CF families telling why they like and don't like certain systems. Then they also taught me how to do CPT (chest percussive/physical therapy). That was super fun. I'm feeling very lucky to have a child born with this disease in this era where we don't have to do that very often. They just wanted me to know just in case the power goes out or our machine breaks. She also taught me the breathing techniques Ruby needs to do 5x during each vest treatment, these are done to move mucus from smaller airways to larger airways and then out.

Anyway, not very interesting, but I'm feeling overwhelmed as I said. Ruby keeps saying I want to go home and I remind her we still have to do all this there and then she cries saying she doesn't want to do this everyday.

Child life (a great program at the hospital) comes in almost everyday to help her deal with things or just to hang out and do projects. On Monday they came in because she hates having dressing changes on her PICC. They had her put a PICC in her baby and then do a dressing change. She did an excellent job btw, I was impressed with the how intently she had watched her own. She new the right order, how to tape it, she flushed it. It was adorable and had to admit I was a little proud. They came yesterday to help me figure out a way to help treatments go more smoothly (it's WWIII sometimes). She brought in a Little Pet Shop house for her to take home with her and we decided she can only play with that during treatments. We've tried to let her do fun things during and after treatments to make them more fun. Today was a lot better, we still struggled by the fourth treatment, but progress was made. Her favorite thing to do is blow gloves up with the oxygen. Not just make a balloon, but actually blow them up. She loves it! We also made a little fort under a shelf where she can hang out during the treatment, she loves that none of us can fit down there. She's doing much better, she sounds much better, still coughing LOTS, and it still looks like we have another week here.