Our Little Weekend

Well, here I go on 3 more weeks of IVs. We went back to Hopkins last Thursday and had good news that my lung function had only dropped from 39% to 36% in one week. My doctor wasn’t too concerned about it and mainly wanted to help me feel better. Just walking from the front of our apartment to the back was getting me out of breath and I need to be able to do more than that!

Because of some side effects I had been having with the IV antibiotics I normally go on, Dr. Merlo (one of my other amazing CF doctors) picked out 3 meds that I haven’t been on for quite a while. On Friday I warned Mom that I would probably lose my mind in the next few weeks. It turns out that only 1 of the antibiotics is stable enough for the home care company to mix and send. The other 2 need to be mixed within 24 hours of use. That requires about 25 - 30 extra minutes a day just to prepare the IVs. Then I had to figure out the schedule of when I get each medicine. 2 of the IVs are twice a day and the other is 3 times a day. I figured out that I am hooked up to my “bubbles” (the medicines are in small, pressurized balls that infuse by themselves) for about 7 hours a day. I am just so thankful that the bubbles are portable and I don’t have to be hooked up to an IV pole.

My lungs are feeling a little better! It is getting easier to do things : ) I was dealing with some strange side effects, however. The first few days I always feel out of it. On Saturday I looked at Jonathan and said, “I think I need to call Hopkins about my IV doses...they might be too high.” He said, “What makes you think that?” I said, “My skin doesn’t feel like it is my skin.” We both laughed really hard when we realized how strange that sounded. Now that I’ve been on the IVs for 5 days I am starting to feel more like myself. No more tingling feet and my skin feels like it belongs to me!

We had a really great weekend! Friday night we spent with our amazing friends April and Darrin and their 3 wonderful girls...it is so great to just sit and watch TV with friends...it makes us feel like a “normal” young married couple. On Saturday evening we went over to the Slick’s house and had a campfire! Sunday was very special too! We decided to stay home from church to allow my body a little extra rest and after all my therapy and nebulizers and everything we went out to lunch to celebrate. You see, Sunday was my 7 year anniversary of having my MediPort (an easy IV access) and every year I like to acknowledge the occasion! Just another reason to have fun ; ) That evening we spent with Mom and Dad and Blizzie. My parents even got me cake! I know it sounds so ridiculous to celebrate something like a MediPort, but it really has been very important (no pun intended) and you can never have too many reasons for cake!

And here is Mom, Dad, and Blizzie at our little party!