Wednesday, June 19, 2013


Yes, this is a blog about my life from my perspective, so it seems exceptionally meta-narcissistic to write a post specifically about "me" but AHHHH!  Here we go.

Boy, it has been tough recovering from Bridget's last hospital stay.  The physical stress symptoms I am experiencing put me right back in grad school, just before my qualifying exams, when my boyfriend figured out he was gay.  (God bless him, he's a really good guy, but I wish he had told me sooner)

That was by far the most difficult period in my life and one in which I have been able to use the multitude and magnitude of my signs of stress as a standard for how every other difficult time since then has been better.  I am not at that level again, but BOY OH BOY am I close.

I don't want to drink alcohol (which is effed up in a variety of ways since that could probably help relieve some of this stress).  I don't want to eat anymore (since my first day home's carb and fat-fest binge).  And what food I am eating is merely waving hello to my insides as it passes through.

On the plus side, I don't have hives---well, more hives than usual ("usual" being the hives that developed after Bridget's first hospital trip two months ago).  And I'm not so sleepy that I don't want to get out bed; I've honestly never had that problem.  But I'm having a hard time exercising because of this constant nausea I feel.

The question is Why?  Bridget is better.  She is out of the hospital.  Everything is going to be ok.

The answer is because I am not fully convinced that everything is going to remain ok. I like information. That does not mean I want to know the future; I am NOT that stupidly naive.  But I cannot find anything on google or in the medical literature on the type of atypical asthma Bridget has.  The one good article a friend sent on atypical asthma discussed persistent cough and non-responsive asthma, but even that is, apparently, more common than atelectasis-as-asthma Bridget has.

Thinking over the last 7 months, it seems obvious to Dave and me that Bridget's first episode of this problem was during the fall.  But she was able to cough everything up then--with a horrible, tiny squirrel rattling cough.  Also, it seems to us that each event is getting worse.  We made it to the hospital BEFORE she got really sick this time, thanks to the pulse ox.  And yet we stayed longer and were on more oxygen for a longer period of time.

YAY for the medicine regimen we're on now and YAY we have a diagnosis and YAY for the blessed pulse ox.  But I feel like we were doing a lot right before this last episode and it was still rough.

Folks, I don't expect you all to read this and to not dismiss my worries as that of a semi-psycho mother.  I fully acknowledge that is what and who I am.  I keep repeating that we have everything at the house now to keep Bridget from getting sick and/or we have enough knowledge to get her in the hospital quick as bunnies to get help.  It still doesn't relieve this mama's fears of some roadside bomb that we're going to have to pass to see whether our current protocol is working well enough to keep her out of the hospital. Or worse.

I would just like to know of 1) some research about people like Bridget or 2) some other parents' experiences.  And we can't find either. We've been searching the asthma parents boards and can't find diddlysquat and adults with this issue do not have as severe of a problem.  (Aside: yay!)

As someone who has a honorary (in her own mind) medical degree in infertility and who can frequently diagnosis a friend's fertility problems before her own doctor, not being able to find any information on this diagnosis is obviously quite stressful.

I know what I have to do is just wait and see. And hopefully drop a couple of five pounds.  But it's still sort of sucky for right now.


James Hathaway said...

YOU shouldn't dismiss your worries as a "semi-psycho mother" -- you're not. You've had two traumatic weeks-long episodes with a small child and have a hard-to-understand diagnosis. If you didn't suffer from PTSD after all this, you would be superhuman. We all worry about our children and when their lives are threatened, we really worry.

Anita Blanchard said...

Thanks, Jim. I really appreciate that.

Rebecca said...

Hey I completely understand. I've been in my own boat for looking for people like me. Pseudoarthrosis, plexiforms, sphenoid wing dysplasia.....gezz......

Just keep blogging about what's going on and eventually people who are looking for your boat will find you and hop aboard. It's happened a time or two with me.

Anita Blanchard said...

Rebecca, I'm not sure you're religious beliefs, but I feel exceptionally blessed that you are here. xoxo

anita said...

Hi Anita, been following your blog off and on for over 9 years now. I'm so sorry to hear about your daughter's hospital stays. I just read this post the other day in my facebook feed and thought it can't hurt to share:

Anita Blanchard said...

Thanks for the info, other Anita. I really appreciate any input!

Carroll said...

James Hathaway probably nailed it, Anita -- PTSD. Be good to yourself, and know that you are doing everything you can -- hoping for & expecting (mostly/sort of at least) the best, but trying to be fully-prepared for and educated about the worst. there can't possibly be a one-of diagnosis in the world with a better qualified spokesperson than you surely will be when parent of child #2 with that diagnosis begins frantically searching the internet someday.

Hat's off to you, my friend!

Oh, and that lack of appeal of (purely medicinal) alcohol at the moment? I bet it's just a matter of timing. Try some wine or a mimosa with Sunday breakfast tomorrow and see if the day doesn't get just a little more rosy all of a sudden :-)