Maggie and Family Update

[Guest guest]

Hello there =))

Here's an update on Maggie and her girl's. I had hoped to update you sooner,

but haven't had much information to share. I have also encouraged Maggie to

send an update to the list when she has some time and the energy. I'll try to

summarize the few short emails I've received. For the newbies on the list...

Maggie, a retired PICU RN, has been providing medical foster care for 2

little girls with CF that were very severely neglected and also

emotionally/physcially abused. Both little girls made huge improvements

after being placed with Maggie for several months. I *think* a is 5 yrs

old and Molly is 3 yrs old. Both girl's were very ill this spring and had a

lengthy hospitalizations. Neither have bounced back as well as Maggie had

hoped. Molly has been back on continuous O2 since April or May, which is very

disappointing because prior to this illness she was only needing O2 at night

- an accomplishment that both Maggie and Molly were very proud of. Maggie

feels that Molly is still improving, it just been very, very slow. It sounds

like a's improvement has been very slow too, she was on a ventilator for

6 days during the worst of the illness and then developed a collapsed lung,

that was resolved with chest tubes. Their doctor estimates that a

probably only has about 20% functional capacity and under normal

circumstances they would be pushing hard for transplant but their foster care

situation, and biological mom has made that very unlikely. I find this

especially upsetting because they live in Missouri, and the best pediatric

lung transplant program in the US is St Louis Children's. I was evaluated and

listed there; it is a very impressive program of very dedicated and caring

people. The current situation with the girl's biological mother is a

nightmare! She even showed up at the hospital one night demanding to take

Molly home with her. I hope Maggie will be joining us again soon and can give

a better update on things - and I hope I got all the information right,

hopefully Maggie will correct me if I've misunderstood anything. I hope she

will write to list again when possible because I think this could be a good

source of support for her and I also think she has a lot to offer. Keep

sending positive thought and feelings to Maggie and family. Thanks!!!!

Love~ , 21yo fwcf