Time is a funny thing. In the moment it can seem never ending. When you can hear your heart beating and everything slows. Then there are times it flies by in a flash leaving you wondering how long you blinked and wishing it would rewind. The past two months have had both instances happen many times.
Most of the flying times are in association with how fast my little girl is growing. She is 5 months old today. 5 months! I can still close my eyes and see our hospital room, the beeping of the machines, the creaking of the bed, and listening to her breathe. I am so incredibly grateful for her. She is incredibly strong. She is already rolling like a madman doing doughnuts in her crib, standing with help, and taking steps (but only if she is in the mood). I am excited and terrified for the day she starts crawling. Excited because her brain is developing and growing, terrified because she is growing so fast. Oh plus the whole mobile thing and I'll have to find a new place for my meds since on the floor isn't going to cut it anymore.
Now to the moments where time seems to stop. Over the past two months I have had to have 3 hearing tests. One was to get a baseline of where I was before starting meds. Not to brag, but the audiologist said I had spectacular hearing. My high frequency hearing was higher than most peoples. About 2 weeks after we got home from the hospital I started getting a ringing in my ears. I notified my pharmacist (who is basically my best friend since we speak 2 times a week if not more). He said to keep track of it and to let him know if it got worse. When we spoke next I let him know it was still there. We decided to have another hearing test and possibly stop the medication that was known to affect hearing. So, I went to get another hearing test. To give a slight description of the hearing tests, you sit in a sound proof room that is about a 6'x6' room. It is so quiet that everything seems amplified. Your heartbeat is so loud and in my case the ringing was deafening. They put a huge pair of headphones on you and you listen for the beeps, the hum, and repeat words back to the person administering the test. After it was over, the news came back that my high frequency hearing was severely lower than my baseline. It became apparent that the medication had to be stopped. Fast forward another week. They had said the ringing would go away once the medication was out of my system. Yet, in my case the ringing only got louder accompanied by a humming. It became harder to hear TJ at night if any other sound was going on such as water running. I went back for another hearing test. As you sit in the room, these are the moments time stands still. Waiting for the beep, knowing you should be able to hear it, but you can't. I knew my hearing has gotten worse. When the audiologist came in to discuss results, I was sadly correct. My audible hearing had gone down. Not a lot, but enough to effect my ability to hear quiet noises. I've been told to prepare for it to be permanent. This way I don't get my hopes us for something that may never come back. I asked what I could do about the ringing and humming at night. When it is quiet these noises are maddeningly loud. Their only suggestion is a noise machine to distract me from the noise. It's discouraging, but I'm still fighting.
Now what? Well, I was put on a new medicine since they took one away. With this bacteria, a cocktail of drugs is much more powerful than one or two meds on their own. The new medicine they were hesitant to put me on. The main side effect is nausea. I have to take an anti-nausea medicine before I start infusing. During the infusion the nausea isn't too bad. I'm just counting my blessings it hasn't made me throw-up yet. The downside is that the next day I am nauseous all morning. It finally goes away around 3pm. Then I infuse again at 6pm.... Makes it difficult to have an appetite. This is tough because I need to keep up my food intake more than ever because my body is working so hard to fight this bacteria and it needs to fuel. In case you didn't know, people with CF have to have a caloric intake of around 4,000 calories a day because we don't absorb nutrients like others. We have to overcompensate to help our bodies function properly, well as properly as they can.
Oh, funny part about my new antibiotic... it looks like I am infusing lemon lime gatorade (or another liquid that is that same color that shall remain nameless). I promise the catheter is in my arm!
