Kira update/pulm

[kirafaesmom]

Well, we got home from the pulm. earlier. Looks like we have some chronic lung disease from the repeat aspirations. The good news is that we've dramatically reduced future damage with the seperation/trach.
Everything considered, her lungs sound pretty good. Our main battle is the mucus plugs. This is not being helped by issue number 2....central apnea. At this time we are to chart/log her night time sats. The doc thinks there's a chance that in the next couple of months her brain with "reset itself" when it gets used to it being easier to breath with the trach. I am more than slightly skeptical of this. However, I'll be the good trachy Mom and document everything. If it continues to get worse, then we'll have to do a sleep study and more than likely go on a vent at night. Really not that big a deal considering we already have the trach.

Michelle
kirafaesmom

[Gretchen(Celia's mom)]

I am so glad that you have a direction to go towards!!

[JWorthington]

Hope things do improve, it's just one more thing to have to do in your already busy lives, documenting everything. good luck:hug:

Julie x

[babybear]

So you're just finding our about the chronic lung disease???? It seems you would have known much earlier. In any event, I'm glad you're moving in the right direction.

[alizesmom]

Michelle, I'm glad Kira is looking better. You have a fantastic attitude. I admire you. Karen

[kirafaesmom]

So you're just finding our about the chronic lung disease???? It seems you would have known much earlier. In any event, I'm glad you're moving in the right direction.
Yes......we are just finding out about the chronic lung disease; thus our recent move from 2 states away to get Kira to Doernbecher's Childrens Hospital. That's not the only thing that was "missed". Essentially, we were told that she would get more and more frequent pneumonias and that eventually it would take her. Nice huh?

[kirafaesmom]

Hope things do improve, it's just one more thing to have to do in your already busy lives, documenting everything. good luck:hug:

Julie x
I've been lucky and had a nice long break from documentation. I used to have to document EVERYTHING for nursing hours. The good news is that it's her night time breathing patterns that we have to document, and I'm a week away from having night nursing help....so THEY get to document!

[babybear]

Wow, that's so scary! I'm so glad you have her in a better place now.