5-17-10 Ally setback ; (

My daughter, Ally, is quite the mystery child. She had a nice end of last week and overall a great weekend and so I did a “happy” update yesterday, but this morning she had low oxygen sats again and then a fever this afternoon. She had a regular pulmonologist appointment today and he was pretty concerned, but is continuing to let me treat her at home. She is not using o2, but did have a desat into the 60s this morning and then we are seeing some periods of low 90s and then later upper 90s. We started another new antibiotic and are extending the other one (her Tobi nebs). At the moment she is doing well, but her day seems to be going up and down.

She is overall in a happy mode, but I hate that something is going on (again). It’s that time of the year for illnesses with all this crazy weather and also allergies. I also took her to a school play Friday night to see her oldest sister, so I am blaming myself some. The tricky part is I have vowed we will not ever live in a “complete bubble” and we need to do special family things. I want Ally to experience life, but then we also take the risk of exposure to germs and illnesses. For now, I just have to keep up with her treatments and keeping her happy.

I’ll try to keep everyone updated. I have high hopes the antibiotics and treatments will do the job, keep Ally out of the hospital, and get her back to her baseline or above soon. I just want her to have a nice spring and summer. I also want to have wonderful family experiences without the worries of germs all the time.

Off to check on her numbers and do a treatment soon (unless my hubby does this one since I’ll do the night ones).

Thanks in advance for prayers again.
Tina