Sunday, June 16, 2013

Hospital Postscript

This is our third time "recovering" from a hospital visit.  I have learned a few things.  One very important one is that when I get home from a long stay at the hospital, I am so full of adrenaline that I can drink a substantial amount of wine and not really have much of a reaction.  It's not something I want to do frequently, but there it is.

I also want to go ahead and apologize to everyone I know in "real life" who reads this blog because I am going to repeatedly tell you the same stories, diagnoses, reactions, etc. I am sorry.  But it helps me get this albatross off from around my neck to share the burden.  (I have no idea if that is the correct literary analogy.  I recall it from high school English, but the wiki entry does not support my interpretation)

ANYHOO.

We are home and recovering from/processing Bridget's diagnosis.  She is on a very strict regimen of medicines for the duration.  I'm hoping we can get down to one (pulmicort) after our follow up visit to her pediatric pulmonologist, but it is absolutely clear that we cannot slack off on this or she could end up back in the hospital.

And that is what is freaking me out.  Christopher's asthma regimen is working.  He gets sick. We go into sick-meds regimen mode and he coughs like crazy but is fine. His lungs remain clear enough to cough the junk out.  I just don't know if that's going to be the same thing for Bridget if the key characteristic of her asthma is creating mucus that then plugs her lungs up and cuts off her oxygen supply.  We got into the hospital and she was on oxygen before this illness even got "bad" this time.  I know we have to "wait and see" but this is not really one of those instances with a large margin of error that could comfort a mother.  Is the pulmicort/albuterol/hypertonic saline going to work to keep her lungs from plugging up again the next time she gets a respiratory virus WHICH YOU KNOW NEVER HAPPENS TO YOUNG CHILDREN IN DAYCARE?

And what is making me insane(r) is that her form of atypical asthma is so rare that I can't google it and find any information, much less another parent/family who is going through the same thing.

Google crawlers:  please send all your atypical asthma children with atelectasis here so we can commiserate with each other and share our experiences.  We know that there are "several" cases of this form of asthma in the Charlotte metro region (5? 10? Out of the 2.2 million people who live in this area??)  Do you see why it makes an information hungry mama get short of breath, dizzy and really, really wanting a Valium because of the lack of  information of other's experiences.

Also, I've already alerted our other mother friends that I will be relying on them for emotional support and medical strategies.  When I start whining about this, I think of my friend who has a son with Timothy Syndrome (there are 40 cases WORLDWIDE of that) or my other friends whose children have asthma.  These families are strong advocates for keeping their children healthy and their medical providers informed.  I'm a big fan of peer and step ahead mentoring, so apologies in advance for showing up on your doorsteps looking for advice and a hug.

So, there you go.  Pardon my repetitive statements in advance.

1 comment:

Rebecca said...

It took me forever to find a group for pseudoarthrosis (Joey's leg problems) but now that I've found one, it's great.

Play around with the wording and maybe you can find a facebook group? Who knows.

Glad your baby is back home.