Sunday, November 22, 2015

25 Days of Lillian (day22) Her immunity disorder explained as best as I can

If you previously read my post on Lillian's medical issues, I listed ciliary dyskinesia as her immune disorder.  Basically, the pulmonologist had a suspicion that this was why Lillian was getting ill so frequently and after  biopsies in her nose, sinuses, and lungs it was confirmed.

We have these tiny, tiny hairs in all those cavities that move mucous up and out of our bodies.  That's part of how we stay healthy.  Lillian's happen to be missing and what is present does not function.  This means that all bacteria remains in those areas and her body isn't able to get rid of them.

They have her on respiratory treatments that are the same protocol they use for CF patients.

She gets a nebulized IV antibiotic every other month twice a day.  She has a vest treatment 20  minutes twice a day every day to move junk up to the point where she can cough it out.

Even with all this, Lillian still gets sick.  We have found that minimizing her exposure to large crowds and escpecially groups of kids helps. This actually translates to really not going anywhere much at all..and flu season is even more "bubble time".

I get super stir crazy this time of year and I'm always weighing what I want and even what I need against how it might affect Lillian, because seriously, it's just not worth her getting sick and being hospitalized.

So, there you that clear as mud?  OH- and this is probably  connected to her genetic diagnosis. It's not a primary diagnosis...secondary to her genetics issues more likely.

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