Monday, February 4, 2013


Emma had a cardiology appointment on Thursday (or some day last week that I can't remember).  It'd been a little while since her last appointment.  On the way there, she kept telling me she wasn't scared like she used to be and that it was so weird to her to not be scared.

Tyler met me at the hospital entrance.  He had left work early so he could take the kids via the van (he had already parked his car in the parking lot for me to take when we left).  We did a fast trade off, and Emma and I ran into the hospital because we were a little bit late.  He took the kids home.

We finally found the right room, and I was signing in when I realized I had no keys.  Tyler had both sets.  So, I called him to let him know I had no way to get home. It had maybe been ten minutes.  He made his way back over, in somewhat busy traffic.

Meanwhile, Ella puked...because that's what babies should do when their dads take the van.

We had to run back down five stories (or more like, take the elevator) and meet him out front to snag the keys.  On our way back, we had to slow down considerably because Emma was out of breath and very fatigued.  She was looking more pale than usual and needed a breather.  She told me she was having a hard time walking and needed to rest.

Just in case I ever forget she is in severe bone marrow failure, I just need to go on a little walk with her, and the effects (affects?) of it are obvious.  It made my heart hurt.

Here she is getting her echocardiogram (basically an ultrasound of her heart).

The guy here was really nice.  The whole time I didn't know if he was actually the doctor or if he was a tech guy or what.  The last two heart checkup appointments she's had here, the doctors did this part.  And...each time we came in, it was a different doctor (though, they ALL have the same last name), so I knew I might not recognize him.  I kept looking at he the doctor or is he someone else?  Should I ask him?

I didn't.  Instead I got out my camera (yes, I brought it with me...of course!), and I asked if I could take a picture.  He smiled & laughed...and then I think he felt very awkward.  Okay, maybe not, I wasn't positive.  But I like to think and hope that he did because I find it amusing.

Oh, and my camera was set to take jpg images somehow.  How?!  I didn't change it!  I never let the kids touch the camera, but maybe one of them did.  I always take in RAW because you can edit them so much better.  So, it was frustrating to realize the file was wrong once I got home.  Oh well.  I think I'll survive.

Photo:  Here she is sticking her tongue out at me...  She also kept rolling her eyes at me when I would tease her.  She cracked me up.  It was awesome seeing her actually having fun and not being afraid.

Then we were taken into a different room where they did the EKG.  I didn't take a picture there, though.  That's where they stick like 10 sticky things to her chest and then there's like a squiggly line machine that does a reading of her heart.  I'm pretty sure that's the official medical explanation of it all...

Emma needed to lay on the table in there so they could stick the stickies on her.  She refused to lay down because she was "being funny" and sat with her legs up and arms around her legs.  In a teasing/challenging voice, she said, "You can't make me do it.  You can't tell me what to do!"

I've mentioned the steroids before, right?  They are to boost her bone marrow production, but they have also increased her strength (even though they aren't those kinds of steroids, it's still a side effect).  She is crazy strong for her size.  If she doesn't want to lay down, and if she's sitting in the fetal position, it takes a lot more than just pulling her arms off her legs and straightening her legs to get her to lay down flat like you can do with a typical child her size.  I simply cannot muscle her without putting forth a ridiculous amount of effort to pry her hands off and then getting her to lay down.  I'm honestly not sure I'm capable of doing it without putting forth enough force (perhaps some headlocks) that it would hurt her.

So, for a few minutes, I was trying to untangle her from herself, and she kept laughing at me, saying, "You can't make me do it!" and it was like we were a flurry of arms.  We were both being goofy.  It was funny, and the cause of much laughter.

But then she wouldn't stop, and she would not lay down.  At that point, I knew I had the option to do a sneak attack - maybe poke her in the eyes a couple times for a distraction.  Then maybe body slam her a few times until she came out of the fetal position.  Which then would let me pin her down on her back while yelling, "Okay!  I've got her down!  Hurry and attach the stupid sticker thingies to her chest and turn on the squiggly line machine before she overpowers me!"  But I'm pretty sure they would have frowned at me for doing that, so I didn't.

It's times like this where I need Tyler's man strength to help me with a tiny ten year old who is the size of a 6-7 year old.  haha.

Instead I stepped back, realizing that muscling her into it wasn't going to work.  It was time to get serious and try to make her choose to comply.  I always try to keep her feeling like she has a choice and isn't being forced into something (like how I say this after I mention how I was about to body slam her?).  The nurse lady was tiny.  I don't even know if she was 5ft tall.  Well, she was stockier than me, maybe she could have muscled Emma down...

So, anyway, we approached it differently and tried to get her to choose to lay down.  We must have talked her into it because Emma ended up laying down and doing it.  But the funny thing was she started meowing "No.  No.  No."  Just like a cat would if it meowed the word "no".  It cracked me up.

A minute later the lady was done.  It took faaaaaaaar longer getting her to lay down than the test itself took.  (After the nurse left, Emma and I had a chat about what was appropriate teasing and what wasn't.  And she needs to not resist so long in the name of humor.  She seemed to get it because she did great later on!)

Then we were moved into another room to see the doctor.  This room had cold air blowing in it.  It was freezing.  I gave Emma her shirt to wear over her little gown.

This is how serious she was being:

I like this picture.

The doctor finally came in and saw we were freezing and moved to another room.  He took out the blood pressure thing and took her blood pressure.  No machine, just him doing it the old fashioned way.  Then he took off her boots and socks and checked out her toes.  He kept checking her extremities, and at that point, I started feeling a really big sense of concern over things.

Never in the past had the doctors (and he was actually the doctor we saw the time before) been checking into things that had already been done and stuff like that.  He excused himself and then almost a feeling of panic set in.  I'd never thought she would have something wrong with her heart again, but what if she did.  He didn't look terribly happy.

He finally came back maybe ten minutes later.  He had apparently spent his time drawing me a pretty little picture of a heart.  Emma's left ventricle is dilated.  It was enlarged last time.  That's not due to her heart defect.  It's due to her anemia.  So, I wasn't too concerned about that.

Then he said that her aorta is mildly narrowing and it's twisted, like a hose.  He said that her blood pressure is just fine and she's getting blood out like needed, so he felt like she's just fine.  It's more turbulent in that area, though, too.  He does want her back in a couple years to check her out.  If we choose to do a bone marrow transplant before then, he wants her back before then so he can take a peak at it again.  He said that it absolutely shouldn't cause any sort of issue during a transplant, though.

So, pretty much I almost freaked out for no reason.  Yay!

We stopped by the gift shop on our way out, for a little gift for her and some candy for the kids.

Then it was time to find the car.  Tyler had pointed in the general direction of where he had parked.  I had him send me a picture of it in relation to the hospital.  So, this is what I had to go by:

It took about 10-15 minutes to find the car.  I didn't have the key thingy that would let me honk his car horn, but that would have helped.  It was a little more challenging than I thought.  The parking lot was a ways away from where Emma's appointment was.  It was like playing an "I Spy" type of game.  Only we were looking for our car.

Anyway, so that was our adventure.  Emma was pretty fun & funny.  It was fun that she didn't get scared.  I really like that little pickle.

We've been having a lot more bone marrow transplant talk and considering some pretty heavy duty, life changing decisions.  It feels like we're nearing a crossroads in our life where things will likely change very drastically.  We're likely coming upon a time where we will only be able to walk by faith, trusting God, with everything else out of our control.  It's something we knew would come one day, and it feels like it is sooo very, very near.

But that's an entry for another time.

Also, some really exciting news...we have an adorably cute little niece that was born this past week at home (go momma!).  A little red head too.  How precious is that!  Congratulations to their family.  :)

I hear banana bread calling me...asking me to make off I go.

1 comment:

  1. I really love to read your posts. They are full of all the heaviness of having to watch Emma suffer, but then they are so full of love and humor and faith. My prayers are with you and your sweet not so little family:)