New Allergist and an IMAX

I went in for Isabel's appointment with a new allergist yesterday.  I wasn't anticipating a long wait as it seemed they had wide open availability when I called to make the appointment the day before and I wasn't actually seeing the allergist, but her nurse practitioner.  We ended up waiting about 30 minutes.  30 minutes is a long time for a 3 and 4 year old.  Logan was doing ok until we all had to go to the bathroom.  Then the nurse rounded the corner and startled him and he had a full on meltdown.  It took a long long time to calm him down.  Once he was finally calm Isabel went to do some testing and the nurse took note about what has been going on.  The nurse practitioner came in and was great.  She was very understanding and receptive of my fears and anxieties, especially about our upcoming trip.  She renewed all of our prescriptions and gave us a prescription on prednisolone to take just in case (something our old allergist wouldn't do) and a prescription for the newest epinephrine auto injector, the Auvi-Q.  It talks!  Isabel took the trainer from me and listened to the directions and injected herself the fist time correctly!  I was very impressed.  Hopefully we will never have to use it, but it's good to know she understands what this is all about.  That is, as well as a 4 year old can understand.

I'm excited to meet the new doctor.  She trained at National Jewish Health in Denver, the leading allergy and asthma hospital in the US.  A friend recommended her very highly and the NP said I was going to love her.  :-)

Today we packed a picinic lunch and ate on the grounds of the state capital.  There are tons of trees and shaded spots to pick from.  We ate quickly and headed over to the Bob Bullock Texas State History Museum to see an IMAX film!  We saw 'Rocky Mountain Express.'  It was all about the trans Canadian railway and it was so good!  I don't think Logan had the full perspective when he was sitting in his own seat, but as soon as Brian put him on his lap his little hands went crazy!  He was shaking them and his feet any time a shot of the moving steam engine came on the screen.  It was really cool.  I could have spend the entire 43 minutes just watching Logan watch the IMAX.  Isabel fell asleep about 2/3 of the way through.  I think the Benadryl kicked in and she couldn't resist it's sedative forces.  The scenery of Canada was stunning.  Seeing a restored steam train make the cross country journey was pretty spectacular.

She had to try on brother's 'conductor' outfit.

Fear

Last week a 13 year old girl died while at camp in California from taking a bite (and spitting it out) of a treat made with peanut butter.  It was a rice krispy treat.  It was dark and rice krispy treats are typically 'safe' treats for nut allergic kids.  This one had peanut butter mixed in.  This from a news article:

After tasting the treat, Natalie realized something wasn’t right and spit it out. Her mother then tasted the treat and determined it contained peanut butter. The girl seemed fine for the first 20 minutes and then began vomiting, had trouble breathing and went into cardiac arrest.

Natalie was rushed to the hospital where she was pronounced dead.

The family reports that Natalie perished despite the administration of three Epipens, a common brand of epinephrine auto-injector. It is not immediately known how soon and by whom the epinephrine was administered after Natalie began displaying symptoms.

Once again, we urge all parents to be vigilant with their children suffering from food allergy, especially teens. Make sure your child never eats an unwrapped food item that hasn’t been cleared by the parent and always make sure to they take two epinephrine auto-injectors along with them each time they leave home. We invite you to print our Take 2 campaign flyers as reminders and display them prominently in your home and child’s school.

Yep, you read that right.  Natalie was give 3 epi pens.  It would later come out that her Father, a doctor, administered the epi pens along with oxygen.  So they did everything right and she still died.

So I just can't come to terms with this.  I'm having terrible anxiety, am getting up throughout the night to check on Isabel and now have at least 3 epi pens with me at all times.  I am freaking out.  For real.  I haven't had anxiety this bad since Isabel was 2 and was closing in on Vivian's age when she died.  It's bad ya'll.

So.  I read on a support group for peanut allergic parents that our kids are ok right now.  Right now they are OK, and this is huge.  Right now we don't have to worry when they are right in front of us eating our 'special' food.  Right now we can make a plane, face our fears and prepare.  We become proactive to the millionth degree.  We speak up.  We use our big voices and we let our needs be known.  We don't feel bad because we're being a pain and requesting special assistance and accomidations.  These are our kids and it is our job to keep them safe.  If I get up and move my shit at the pool because your kids are eating PB and J's and running around all over the place, don't be offended.  Or be offended.  I don't give a flying you-know-what.  When I scream at my peanut allergic 4 year old to 'STAY BACK!  GET AWAY!  I'M MOVING OUR STUFF!'  Don't look at me like a crazy person.  Or do.  Again, I don't care.  Better yet, maybe ask what's wrong and if you can help.  This is serious.  This is my kid.  Imagine if it were your kid.

So in doing more research about food allergy deaths, epinephrine, etc etc I've come to the conclusion that our action plan is wrong.  If there is a suspected or known ingestion of a food allergen (peanuts/tree nuts) we will give an epi pen first, call 911 and ask questions later.  I expect anyone taking care of Isabel to do the same.  If they aren't comfortable with that (I don't expect anyone to not be) they won't watch her.  Simple as that.  Isabel has asthma and that makes the potential for reactions to be much worse.  I will also be testing people who are around Isabel often (grandparents, aunts, uncle, etc) about what if's and making sure they are comfortable administering an epi pen.  What if Natalie's Dad administered epinephrine immediately?  We will never know, but taking out the 'wait and see' approach to anaphylaxis and going to the administer epi/call 911" plan has greatly reduced my anxiety and fear.  Some allergists have been recommending this currently.

When I heard of Natalie's death I was gripped with fear.  Isabel was with Maddie for the afternoon and I was freaked out.  I almost went to pick her up, but remembered that her Mom is probably better equipped to administer an epi pen than I am!  She's had to administer them to herself a few times.  She goes into transient anaphylaxis once every few years.  No known food allergies!  So I calmed down and anxiously waited with Logan by the window for Isabel to come home.

Now for some cute pictures, because this post was too heavy.  Isabel declared our park date while Logan was in therapy 'the best girl time ever!'

We're jumping in!

We're refinishing the kitchen island this weekend! The kitchen cabinet redo has begun! We've sort of eyeballed it and split it up into 8 manageable sections. Hopefully seeing how good the finished product looks we'll find the motivation to get the project finished by April. Our goal is to have it done by Isabel's birthday. I'm sure we'll get all excited and do a few sections and then get burnt out for a few weeks, but we'll see. 3 months should be doable, right?

We're all in short sleeves over here. The high today is 79 degrees! You know that feeling when you've been working really really hard at the gym and doing great with your eats and then excitedly putting on a pair of pants to see how they fit because surely they will be loose? Yeah, that didn't happen to me this morning. I was mad at my jeans for not being loose. Come ON. Why is weight loss so hard after 30 and after 3 babies?! It was so much easier 10 years ago!

Here we are waiting for Logan to finish PT. can you see how red her eyes are? Silly cedar pollen.