Wednesday, June 28, 2006

Update on Annika

Kimberly took Annika to Met hospital on Monday, June 26. She would have preferred to take Annika to the hospital in London, but London was full.

Annika is on 2 IV abx. They are treating her as thought she has a lung infection, even though her cultures are all coming back negative. She was scheduled to get a PIC line yesterday so Kimberly could take Annika home for IV meds, but the doctors rescheduled the PIC line for today.

Annika and Kimberly are in good spirits, although Annika has had 4 IVs so far. She sweats so much that the IVs slide out.

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.