Sunday, January 15, 2012

Reaching Out

I feel like I should take up residence at the Children's Hospital. Wendy has been there twice just last week and we will probably be making the trip again tomorrow. Last Monday, as you know, she had to go have her g tube replaced. Well on Friday, she had an appointment with Urology and we had to go back to Pediatric Surgery to get her button changed again.

The Urology appointment went well. They did an ultrasound to check her kidneys. The hydronephrosis in her left kidney is gone. And the reflux in the right is still a grade I. They changed her antibiotic to Bactrim because she is 3 months old now and they said kids can build up a resistance to Amoxicillin. She will be on the Bactrim until she's at least 12 months old, but in 6 months we follow up with her urologist.

She got a Mic Key button put back in, in place of the Mini. It's not leaking as bad, but is still leaking some. Enough to get her bag wet and make it come off. I think she is going to need a 16, instead of a 14. If she is still leaking tomorrow, I am going to have to take her back to Vanderbilt because I cannot continue to replace colostomy bags 2-3 times a day. It's going to start really irritating her skin where it's actually sticking good.

I joined a website called Chromosome Disorder Outreach where I can try to find other parents of children with disorders similar to Wendy's. I know they said Wendy's is one of a kind, but there may be another closely related one out there. I feel like maybe reaching out and seeing how other parents are dealing with this may be of great value. It can't hurt in any case.

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