Re: Sugery again....

[Guest guest]

We had Macey on sinus treatments of rotating maintenance antibiotics, sinus

irrigations and sprays for years before her disease started to get under

control. The daily treatment was sometimes almost as labor intensive as when

she had an infection. We were told early on that she would need irrigations

under anesthesia at least every 6 months. After a good round or two of IV

medicine and the improved maintenance program she ended up only needing 3

surgeries. The ENT told us that once we started relying on the anesthesia

irrigations and lavages that she would need those to even stay clear. We didn't

want a cycle of sedation and scraping to start so we were vigilant about her

home routine. The bone damage was done by then and the headaches still happen

even now but she was 6 when she needed her last sinus surgery.

When she had the NG tube last year we had to get aggressive with her sinus

program again because it irritated it so much. And if she needed tube feeds

again they said she would not be able to tolerate another NG. So for now with

her bowel disease she is drinking enough supplements to keep the tube away and

the weight is literally staying 4 lbs above the cutoff for getting a g-tube.

But if her sinuses were still good we could have tried the NG again.

Ursula

Mom to (17) and Macey (14)

http://www.caringbridge.org/visit/maceyholleman

________________________________

From: le Mina <daniellemina@...>

Sent: Thu, January 21, 2010 2:47:35 PM

Subject: Sugery again....

Tristen had been doing so well for the past year once she started subq...she

even went 6 months without any infections (which is a record for her). But the

past 10 weeks she's had a sinus infection that just wont go away. She's been on

6 different antibiotics and while they have worked a little...she' s still

infected. We saw the ENT today after her CT scan and her sinuses are completely

blocked still. So next Friday she goes in for a sinus flush. I was told to

stop her antibiotics until after the surgery to let the bacteria grow so they

could get a good culture of it. This should be an oh so fun week!

So I'm wondering if I need to start keeping her out of activities like

gymnastics, birthday parties and preschool. I would hate to have her stop, but

her being sick and having surgery isn't fun either. And how do I tell an almost

5 year old that loves being around her friends that she can no longer do that?

I try to keep her away from " germ pits " as much as possible, but I'm just

wondering if I need to go further. Or is this just part of having CVID and

something we have to get used to.

Sorry for the rambling, just getting my thoughts out so I can process it a

little further.

le

Tristen 4 1/2 CVID, asthma, allergies