Friday, November 20, 2015

And the Beat Goes On

With much anticipation, we FINALLY headed to University of Chicago this past Tuesday for Allyn's heart cath.  This is a procedure we have been trying to have done since July.  It's totally scary when you wait that long for something and it finally arrives.

Allyn went to school through last Thursday.  We purchased some pediatric size masks for her to wear in the classroom and on the bus ride home.  I kept her home on Friday.  Her school had a parent-child activity day.  I decided it was just too risky and a friend sent me a text saying people were coughing all over the place.  It stinks to have to limit your kids activities but I definitely made the right choice.

THIS SWEATSHIRT.  It's from the Gap toddler section.  She loves it.  There is even a tail on the back. I should also add, Ben hates cats.

Mimi and Poppy made it to town on Sunday.  Both kids were beyond thrilled to see them.  We haven't seen them since Emily's wedding in September.  Just wish it could have been under more fun circumstances.  They came to keep an eye on Nolan so that Ben and I could both be at the hospital with Allyn.  I kept Allyn home from school on Monday too.  We cancelled occupational therapy.  Better safe than sorry.  I had to take Allyn in for a pre-op appointment on Monday too.  So Monday ended up being a busy day.  And going to sleep on Monday night was next to impossible.  Racing thoughts.

Tuesday morning we hit the road around 6:15 a.m. to make our 8 a.m. scheduled pre-op time.  Interstate 55 traffic almost always sucks.  We got to the hospital right on time.  One of her cardiologists got called in for an emergency so they were running a little behind.  Around 9:45 a.m. she finally headed back to the cath lab.  I got to go back with her.  You never get used to watching your child be put down with gas.  Ben and I headed downstairs  to grab a bite to eat and not talk about surgery.  Around 11 a.m. we headed back up to the waiting area.

Within 15 minutes of getting back the other cardiologist came out to talk to us.  He started the transesophogeal echocardiogram and they noticed SIGNIFICANT mitral valve regurgitation.  Never once have we seen this; not on her first transthoracic echo, not on the first TEE, not on the MRI.  So it chose to show up on the day when all of our hopes were hinged on this procedure working.  He said they were going to finish up and they would come out to talk to us.  So I held back tears and let my thoughts race quietly in the waiting area.  I looked at news on my phone and generally tried to be somewhat positive for the next thirty minutes.  

Both doctors came back and they had still not completely given up hope for placing the occluder for the ASD and also closing the PDA.  But we had to make some choices.  If the valve was really leaky it would need to be repaired.  It would absolutely have to be repaired with open heart surgery.  And if we successfully closed the ASD with a device, it would have to be removed to repair the valve; not an easy thing to do.  But they were not sure the valve really was leaky.  It looked normal on the transthoracic echo and also all of her pressures were "normal" (at least where we expected) during the heart cath and she has no left heart enlargement.  So one of the four measures showed a leaky valve and the other three were good.  So did we want to try to close the holes?

After a lot of back and forth, we decided to not try to close the holes on Tuesday.  It was a really difficult decision.  On the one hand, open heart surgery has much higher complication risks and longer recovery.  But we wouldn't want to potentially do more damage, and we just couldn't be sure that we wouldn't.  So we didn't.  And I still am not 100% on that decision.  Her doctors will be sending her info to other hospitals and they will review.  I hope we can get feedback and make a decision next week.  

And this is where it just doesn't make sense.  I'm okay with where we are.  It is a little heartbreaking.  I just want her to be better.  I often find myself fearing losing Allyn.  And I don't think it is an unwarranted fear.  She is the most joyous of children and I am at my best when I am with her.  (Nolan's great too, but if you spent a moment with her, you would see what I mean).  If I could hold her tight and never let anything bad happen to her, I would.  But ultimately, her health is just out of my control.  

I prayed about this surgery.  I prayed about the occluder.  I really really really wanted this surgery to work.  But I also prayed for the future.  If this occluder was every going to be problematic, then the surgery would not work.  And that's where faith comes in.  Maybe God was saving her in a roundabout really stressful way.  Because the future with that device wasn't the best for her.  She's "complicated", "unique", and "academic" as so many doctors have told us.  We still don't know the whole picture of what is going on with her health and ultimately there probably isn't another case like hers that we could compare.  I'm somewhat terrified of the number of surgeries in her future: her heart, repeated spine operations, and who knows what else.  But in the terror, I find some peace.  And I have no doubt that it comes from God.  It comes from prayer, and not my prayer.  Every single person that has ever prayed for her healing.  If you have, thank you.  You have given me peace when I should be a ball of nerves and bawling my eyes out.  Instead, I'm able to focus on her, make educated and informed decisions that could be incredibly emotional, and overall just be a good mommy.  

So while this time wasn't the outcome that we hoped for, we move forward.  Stronger, more informed and maybe even a little bit sillier.  

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.