Just Keep Swimming!

Good morning! So I was really tired yesterday and ended up not blogging much. A lot of you are texting and asking for an update so here I am! :) I did a little research and asked a couple questions. The doc over the weekend said I keep growing different kinds of mold, but didn't say what kind. Aspergillus are mold spores that are all around us and we all breathe them in every day but healthy people typically don't get sick from it but when you have a lung disease and a weakened immune system it can take up residence in your lungs. My first time culturing for this was in October of 2010. That led to my steroid induced psychosis that December when I almost died. I have not taken steroids since then. I asked what medication they would use and they said voriconazole, and the doctor's exact words were, "But I don't know if the side effects would be worth treating it which is why we'll leave it to Dr. Solomon since he knows you and follows you." I looked up Voriconazole and one of the big side effects is blurry vision and extreme light sensitivity--it says you cannot drive at night while on it and possible not even during the day depending on your vision. There were a lot of other not so pleasant possibilities, but I've learned over the years that I do need to research and educate myself so I can ask good questions, but to not "Dr. Google" too much to where I start vainly speculating and getting anxious about all the "what if's". As Sarah says, "What ifs are Satan's playground." God doesn't give you grace for your imaginations, but He does give you grace when you need it. The doctors typically come around 9 or 10 so depending on how crazy it gets with talking to them and being scheduled for my PFT's to check my lung funtion this morning and whatever else, I will try to do a quick update with at least the exact diagnosis and different options. Jord and I have talked and feel like, if it's an option to hold off on treating the Aspergillus, that we finish out this IV first and then once the pseudomonas is under control and I'm off the IV antibiotic, then we could start treatment. Another possibility is he may want to do a bronchoscopy to go in and get a biopsy and culture from deep in my lungs which is more reliable than me coughing stuff up for a sample. I don't know what the future holds, but I'm thankful I know the One who does and NONE of this surprised Him and none of it has come to us that hasn't first come through Jesus and been ordained for my ultimate good and His ultimate glory. I figured out I can walk in the Children's hospital after 6AM so I explored that this weekend and it's so much fun to walk over there. I really wish that they would decorate and make the entire hospital as fun as they do the children's area. Adults need cheering up too--the doctors said that at Christmas time they have themed Christmas trees. Growing up in hosptials it really is challenging to go from pediactric stays to adult stays....the adult side seems so much more sterile. That's why I love that my PCD pal, Renee, started the non-profit, PCD Smiles, to ship cheer packages to any PCD patient at anytime to cheer them up because she recognized how important cheer packages were to her when she was hospitalized or super sick. Maybe I'll start a campaign to get more colorful stuff on the adult side...who knows lol! The kids has a Harbor family center and the schedule says they have a Kentucky Derby Craft this coming Satruday and I was like, "I wanna do a derby craft!" LOL I need to get going as my RT will be here soon to do treatments and I haven't really eaten breakfast yet. My nurse last night was in the Army and raised on a ranch in AL and now breeds French Bulldogs and Golden Doodles and we talked for an hour this morning after he drew labs. The pictures are ADORABLE!! It makes me miss Blue and Roxy all the more. Jord said they are definitely bored....they aren't used to being home alone all day every day. Even if I'm sick and don't feel good, I'm home and Blue is my shadow--wherever I go, she goes. My ENT is writing a letter about services she provides for alerting me to people and traffic when I'm walking outside, especially with my new nerve hearing loss...once I do a little more work with her, I'll be able to take her with me as my service dog and I'm SO excited about that!! Gotta Run! Rachelle