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Update on Cambrie...

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Just wanted to let you guys know....we followed up with pulmonary since

when we came off the antibiotics, not even 24 hrs later she was sick

again wheezing, congestion, cough, ears, even had another blue,

cyanotic spell...ugh!! She'll stay on the antibiotics she's on and

after she finishes she'll go on another antibiotic for a month. If it

doesn't work they'll have to put her back to sleep and do another

bronchoscopy. Her immunologist agrees with the plan and also wanted

some more blood drawn, so we had that done too...more IG's and some

kind of lymphocyte markers. I just don't understand...her doc's are

wonderful and honest and great...we're so blessed to have found

them...they've both been honest and have said to be prepared for a very

rough winter...hopefully it won't be as bad as the last one....we lived

in the hospital for a long time...

My daughter who has hypogammaglobulinemia, tcell deficiency, and PID

also requires a Gtube (feeding tube, she refuses to eat)...does anyone

elses immune deficient children require or have ever required a feeding

tube...?

Kymberlie

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