March Clinic and confessions

Olivia met with her new CF team for the second time on February 29th. Our main goal, from our January 25th clinic, was to increase her BMI (which was a measly 11%).
-We rocked the house and brought it up to 53% with the assistance of Periactin and tons of heavy cream. The only side effect we have encountered with the Periactin is it turns Olivia into hell spawn, but other than that we love it.
-Her o2 saturation was 98% last clinic and dropped to 97% and that was after doing breathing exercises to bring it up from 95%.
-Her old clinic used to perform yearly bronchoscopies and she always benefited from them, but her new clinic only performs them when they are needed to eradicate an infection and we are totally comfortable with that since her yearly bronch always came when she had something we couldn't knock out.
-Her new clinic, however, does do yearly CT scans to monitor her lung condition which she had never had before. We were really dreading her having it because she would possibly have to be sedated unless she could keep still for 3-5 minutes. Yeah right. You can imagine our surprise when she hopped right onto the table, laid down, told us she would be good and she actually was! She was a total pro and didn't get freaked out at all.
So we were in great spirits about the day. Her BMI was great, she did great with her CT scan and each member of the team was pleased with her health. When the doctor came in we discussed the dosage of her Periactin to see if we could tweak it and get her slightly less demonic and then she started looking over the images from Livy's CT scan. Her lungs have pockets of air trapped which isn't a big deal and can change from breath to breath. The scan also showed scarring from previous infection and lung disease in her lower left lobe. Obviously, I knew that she would get both of these things eventually, but I thought and hoped that "eventually" would be a long time from now. I know that there are many people that are a lot sicker than Olivia, but it still is painful to have a doctor tell you things that could one day take your child from you. I try to always stay upbeat and focus on and express the positive parts only of Olivia's health. I tend to keep the negative things to myself because I don't want anyone to worry and because, I'll be honest, when something is wrong with Olivia's CF health I feel like I'm failing at being her mom and taking care of her.
We don't really discuss CF in our house too much and how it affects our life. Sure, I can spout out the facts and statistics but I'm not good about REALLY talking about it. I don't like feeling weak or crying in front of people and that's what I tend to do when I talk about CF and it's residence in my child. I know there are amazing drugs in the pipeline that will help so many CF'ers, but in the meantime I hate it and wish it would go away. I hate hearing her cough and wonder if she's getting "CF sick" or just "regular sick". I hate being in public, hearing someone cough and find myself looking to see where the person is in relation to Olivia. I hate looking to see if they covered their face properly or if they coughed into their hands and are now touching something that Olivia might touch. I hate the situation of being with friends who people come near her when they are sick (especially with something respiratory) because they don't know much about her illness or understand it. I hate watching to see how often people are washing their hands. I hate arguing with her to take her enzymes when she eats because I know she's going to feel awful if she doesn't. I hate watching every bite she eats to see how much enzyme she needs and how much Miralax she is going to need instead of her just eating whatever whenever. I'm sick of having alarms on my phone to keep track of her Zithromax (Monday, Wednesday, Friday only) and Periactin (2 weeks on/2 weeks off). I'm sick of all the medications and treatments. I hate being worried about second hand smoke. I hate knowing that by watching all of these things in order to keep her as healthy as I can that I'm not fun or inviting to be around. I hate that despite my best efforts, this horrible disease continues to grow in her. I want her to stay healthy so that when the drugs to get released for her gene mutation, her body is as undamaged as possible. I want to forget that CF exists in her body and just relax and let her run and do what she wants and not worry that by letting her act like a 4 year old she could get sick. I read about CF'ers that were healthy and then get pneumonia or something and die in a few days time. I can't imagine and don't like or want to think about it. My heart aches for those that has happened to and is still happening to. Along with my worry about Olivia, I worry how her illness affects Chris, family, friends. I worry about the health of 60,000 people with CF that I don't even know. I worry about what to tell Olivia when she starts asking the hard questions. I worry about her not having anyone near her that can relate to what it feels like to have this illness. I worry if she's going to be dumped by some asshole boy because he doesn't want to deal with all of this. I worry about her future and not just her physical health.

All that said, I know that I am surrounded by people who would listen if I wanted to talk about it. I know I'm surrounded by people who will help when or however they can. I know Olivia is in good hand with her doctors. I know without a doubt SHE IS A BLESSING TO CHRIS AND ME AND I WOULDN'T CHANGE HER FOR THE WORLD!! She may have CF, but it NOT WHO SHE IS! Lastly, I know that we are all doing the best we can. That's all we can do.