Ricky has had a chest infection for over three weeks now. Below is my latest update to one of the CF lists that I wanted to share with you guys cause I'm more likely to get sympathy from you. I am so worn out.
The Ricky saga continues. He's been on Zithromax since Sunday and has had four poop accidents since then. I know the very strong dose of Zithromax is wreaking havoc with his digestive system. I offer sympathy and repeatedly change his bed sheets (time to do more laundry). The acidophilus isn't doing him a bit of good. Is there any anti-diarrheal that will help him and is okay to give to a little kid or should I just let nature take its course?
It would maybe be worth it if the Zithromax was doing any good. He's being really good about taking it and doing extra treatments + inhaled Tobi every day and yet he still has this horrible cough that isn't bringing anything up but just getting worse. It feels like an uphill battle I am fighting alone because Dad (from whom I am separating, but he still lives here) just doesn't do Ricky's treatments when I'm not around, and then lies about it.
And here's the really fun thing. Every 6 months or so, Ricky's gastroenterologist does a large battery of blood tests. This one showed high IGE levels (this is a measurement of allergy sensitivity apparently) which in pwCF can mean that a person is growing aspergillus (fungus) in their lungs or elsewhere. I know what aspergillus is and everything. This same result came up in February when Ricky was in the hospital and nothing was done, no testing or anything. I wonder when they are going to take it seriously.
Then again maybe he just has allergies like his mom. And not aspergillus. Wouldn't surprise me.
Once again his throat culture showed zippo and I'm beginning to think they might finally take it seriously and do a bronchoscopy on him so we can figure out what we're battling.
This is the first time I've really felt overwhelmed. I feel like Ricky is depending on me and only me to fight this fight for him and I'm letting him down because it's totally overwhelming me. I feel like crying at any moment. I am afraid of him going in the hospital and yet afraid of him being at home and getting sicker. Last hospitalization I tried to get them to send us home with a PICC line (March moms and Shane, this is a semi-permanent IV line) and IV antibiotics and they didn't even think we could handle it, which I found incredibly insulting. They wouldn't even put in a PICC line and so once he was feeling better (3-4 days) he popped out his first IV and proceeded through 3-4 others. So I don't know what is worse, aggravating here at home or having him in the hospital.
Some sympathy, advice, doctor bashing... anything would be greatly appreciated at this point. I can't believe the guilt, anger, disappointment, frustration, discouragement I'm going through.
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