Thursday, November 5, 2015

The Waiting Game

Prepare for the worst.  That's one thing I have learned to do when you have a child who will be going under anesthesia during cold and flu season.  

Allyn was supposed to have her heart catheterization yesterday.  It didn't happen.  She got sick on Sunday.  And this is where I step on toes.  Please keep your sick kids at home.  If they are running any kind of fever or seem off, please don't give them ibuprofen and send them to school or childcare.  I know some families have a hard time making ends meet and need to go to work.  But there are families like ours who, because of exposure, have to cancel really important procedures.  And there are kids worse off than Allyn.  Children with compromised immune systems who really CAN'T get sick.  And while we are on the subject. Vaccines.  We are lucky that Allyn can receive vaccines, but there are some kids that can't.  Do your research; get preservative-free ones; space them out. But please vaccinate your kids.  Because the health of a lot of really sick children (and even some adults) depends on it.  

So there's my PSA.  For today.  Putting soap box away in 3, 2, 1.....

Someone said I was handling it well.  And then later I broke down in tears.  I feel like I have done EVERYTHING right.  And still, here we are.  So, yeah, I'm a little devastated this procedure is getting pushed.  And if you say everything happens for a reason, well, I can't even respond to that.  It may be true, but it really is a crappy thing to tell someone.  I also told someone I should probably be taking an anti-anxiety medication.  But given my family's history of addiction, I just can't.  I would have to take it every day because every day is stressful and I'm constantly anxious.  And I don't want to get used to feeling numb.  If it weren't for some serious exercise, I would probably have a stroke.  Thank goodness for a gym.

Onto fun stuff.

I got this fun new shirt.  It's from the Gap boy's department.  I am wearing an XXL.  It's not supposed to be 3/4 sleeve,but I just love it.  (I had to crop out a lot of mess around me in the office.)  And when you have a first-grader who loves Star Wars, it's a hit with him too.

Still loving school.  Here she is as she spots her school bus.  Happy, Happy, Happy.  Her shirt is from OshKosh and says "Lost Crown.  Reward if Found."  Couldn't fit her personality more.  

She had a pulmonology appointment last week.  They feel confident her pulmonary hypertension is due to only her heart condition and it should resolve once her heart is repaired.  Good good news.

We also had an orthopedic appointment.  The brace just isn't holding her spine the way it should.  Her curve is 49 degrees in the brace.  So it's even more out of brace.  We will be going back to serial Mehta casting once the heart is fixed.  I have been so grateful for this time we have had to be a kid and it's a little sad to know we are going back to cast life.  But I was prepared to hear it and I know ultimately it's what is best for her spinal health.  

And the loves on Halloween.  Elsa and a Zombie.  Allyn was by far the cutest Elsa I have ever seen.  And Nolan loves his scary costumes.   His sister, however, was not a fan of the mask.  

We have the best neighborhood for trick or treating.  Lots of really good candy, friendly neighbors, and it's totally walk-able.  Allyn and I only hit up about 10 houses and then came home to eat some dinner and hand out candy.  It was cool and drizzly.  Having grown up in Mississippi where my Halloween costumes were often sleeveless, the idea of layering up is bananas.  But this year was quite the improvement over last with the freezing rain and 30 mph winds.  If the weather is ever 50 degrees and clear on Halloween night, I'm pretty sure Nolan could cover our entire neighborhood.  

Back to life, we hope we get in for the procedure in the next couple of weeks.  And we really hope things go well and it's the only heart procedure she needs.  Until then we'll be hanging out with our medical face masks and doing a lot of hand washing. 

2 comments:

michelle said...

Your daughter is so precious! I hope she can get her procedure done in good time w/o further delay. I'm also glad you encourage people to do their research on vaccines. (The frustrating part is that vaccinated individuals can "shed" viruses for any length of time after a vaccination, thereby exposing others. I hope the face mask & hand washing help keep your little girl healthy!)

Shelley said...

Michelle, that is why she got the flu shot and her brother did too since he could shed the actual virus and get her sick. I seriously felt like I over prepared. And she got sick anyway. But this week she has masks to wear at school and is being Dr Allyn. And we have cancelled all of our other activities around kids.