Wednesday, June 21, 2006

The rantings of a lunatic mom....

Well I am sending this out to everyone who has expressed concern or has called me in the last few weeks.I am very sorry if I haven't returned your calls!~
Since Annika's hospital stay, she has developed a cough that has not let up. She coughs so hard that she vomits. She runs a fever on and off. I am starting to feel like a hypochondriac. I notice every little thing with her that is not "normal". Annika never had a cough, so this is freaking me out. It is not just a "little" cough, this is a heart wrenching, make you gag along with her cough.
Her throat culture came back normal flora, but when they did a nose suction for RSV it came back adeno- causes tonsillitis, throat, nose and ear infections.
The doctor says her lungs sound clear. She is loosing weight( I often wonder is it is all the energy she is using on this cough and breathing)so I have been stuffing her like a pig. My whole life is treatments and feeding this child( not that I am complaining, it is ok considering the alternative of not having Annika)
She does Pulmicort 2x day, Ventolin 4x day, Enzymes with every feed(8-10 pills a day). She has Keflex 3x day and Vest 2x day. I throw in a manual CPT everyday. I can't even keep up to her holistic treatments, so they have gone on the way side. I want to start her on hawthorn, I have talked to many people who have their cf kids on it, and weight gain is a great side effect. She nurses 5-8 times a day ( yes you read right) she has a yogurt in the morning, I give her whatever we are eating with fat added at lunch and dinner. Anytime I am giving her enzymes I sneak in 3 - 12ml syringes of Scandishake for the calories. She won't drink out of a sippy cup.
My whole life is cf right now, no social club for me, though I fear I need a night out for sanity.
I am trying to concentrate on my health somewhere in there.
This is all ranting's of a frustrated cf mom.
I have a friend with cf right now, who is not doing well at all ( she is 42) and this just wakes me up to the realities of this crappy disease. I hate it. Today is a bad cf day! Thanks for listening to the ranting of a lunatic (sadistic laugh)
I know this to will pass. It is just frustrating when you are doing everything like you are suppose to and your child still gets sick.