Boy, we are sure enjoying our new home. This is something Ryan and I have talked and dreamed about for a long time. We are so excited to finally make it happen! Thank you to all who helped get us here, you know who you are!
Mr. B is loving his new home also. He has plenty of space to run around and he is loving our driveway. He drags out his tractor and flies down it! It’s only a matter of time before we have a complete wipeout!
It didn’t take too long for car washing to get boring and for Ben to decide he’d been over-worked thus needing a break.
Now on to the potential bad…. Ben’s preliminary culture results are growing a “gram negative rod” which could be a couple things. At the top of the list is the dreaded pseudomonas. The bacteria that we just spent over two weeks in the hospital fighting off. The bacteria that wasn’t supposed to be back for a long time. This was heartbreaking news for Ryan and I.
However, we aren’t giving up. The final results will be in tomorrow. It could also be the H-flu which Ben has grown before. This will be treated with antibiotics and should go away in time. Or it could be E. Coli which CFer’s can sometimes pick up. This will not be treated, just watched until it goes away on it’s own. Of course, we are hoping that it’s either E. Coli or H-flu because they are a lot easier to treat. We’ll know the results tomorrow. Please continue to keep Ben (and all other CFer’s) in your prayers.
I have also decided to leave the Cystic Fibrosis Pharmacy. I have not been happy with their services for awhile but have stuck with them because I know mistakes can happen. They are supported by the CF Foundation and put money towards research. Something I would like to support.
Well, we were still waiting on our Pulmozyme that was ordered two weeks ago for Ben. We had decided to go ahead and try Pulmozyme since he wasn’t tolerating the HTS so well. Anyways, after I got our culture news, I decided to follow up with them and figure out what was going on. Turns out they sent it to our old address in Santa Rosa over a week ago. An address that I have repeatedly asked them to delete because it continuous held up our prescriptions. Over and over I was told it was not going to be a problem. It was extremely frustrating to find out it was delivered to the wrong address. Thousands of dollars worth of medicine has now gone to waste. While they were extremely apologetic, I asked them to close my account because I couldn’t take the stress of ordering from them anymore.
I do not mean for this post to stop others from using the CF Pharmacy, it’s just something I needed to get off my chest. There. I feel better. Thanks for listening.