Cf is...
-Being very isolated and extremely lonely.
-Worrying that Laila could catch a common cold that could easily land her in the hospital unlike babies and kids without CF.
-Pounding on my babies back and chest twice a day to loosen any mucus that may be in there or to prevent it from settling there.
-Giving her enzymes before she eats anything so she is able to digest her food.
-Worrying when visiting with friends or family that they may have been around someone sick and may spread bad germs to Laila.
-Worrying about being confined in an elevator with people I don't know breathing in close proximity to my child.
-Not going places where I have to wait in line with her. I don't want her so close to too many people I don't know.
-Not wanting to go anywhere by myself where I could get sick and bring it back to her. The DMV, nail place, etc all make me uneasy and I feel like I want to wear a mask.
-Not using air freshener sprays, scented candles or anything that could irritate her lungs.
-Freaking out that pseudomonas is everywhere and trying to keep it out of her lungs for as long as possible.
-Making sure her toys are cleaned everyday and are free of germs.
-Throwing out toys that can't be thoroughly cleaned.
-Buying a vacuum that has UVC lights on the bottom to kill bacteria on the carpet.
-Not letting her be around my friends children that are in school or daycare because they get sick often.
-Being heartbroken because I want her to play with those same kids.
-Wanting to scream at random people that come up and touch her because "oh, she's so cute". What makes strangers think that because she is cute, she wants to be touched or that I want their germy hands on my child.
-Realizing that nobody I know has researched CF as much as I have and that nobody could keep her as safe as I could.
-Worrying that she is not gaining enough weight fast enough and if they will put her on a feeding tube eventually.
-Counting down for her next CF clinic appointment and wondering if I am going to get bad news.
-Even if all seems good at the appointment we then have to wait a week for the throat culture results to see if she has grown Pseudomnas, Staph/MRSA or anything else.
-Being annoyed when people say "but she's doing so good right now, don't worry, be positive" Yes, she is but that is right now. I am as positive as I can be knowing my child has a deadly disease. CF is a disease that will progressively get worse. CF doesn't get better. She's doing well now because I am diligent and have committed every second of my life to her health.
-Praying that we can all raise enough money for the CF Foundation so they they can find a cure and my precious angel can live a long,healthy, happy life.
It goes on and on. I will probably add to this when I think of more. These are everyday worries. If I sound like a freak imagine having a doctor tell you that your baby has this horrible disease that there is no cure for and the average life expectancy is only 37 years old. I REFUSE to out live my child. That can NOT happen. If you were in my shoes you probably would be a bit crazy yourself. I don't remember what it feels like to feel at peace and I won't every get this horrible feeling to go away until she is cured.
What is Pseudomonas, you ask?
Pseudomonas aeruginosa is widespread in the environment and repeatedly infects most CF patients. Aggressive treatment with antibiotics successfully fights most initial infections. Over time, however, P. aeruginosa infections often become permanent; more than 80% of adults with CF are chronically infected with P. aeruginosa. The chronic infection and inflammation associated with P. aeruginosa accelerate damage to the lungs, leading ultimately to respiratory failure and death.
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