Tuesday, May 14, 2013

cath update

I know I'm getting behind with blogging and updating everyone about Andrew's cath.  I was so bad on Friday I can't believe I didn't even post anything all day, except on Facebook.  Turns out, I had a good reason, which I will get to later... to say the day was exhausting would be an understatement.  But let me go in order... we'll start with the fun part!  Normally I like to end with the fun, but in this case we had to do the fun first.... (well, after his Thursday pre-op appointments)...  I'll warn you in advance... it's a long update!  But I didn't want to break this one up.
He was as big of a boy as I'd ever seen him.  Just going through the motions like it was second nature to him.  I was so proud of him!
Dr. Andrew!
He didn't even cry for his lab draw this time.  I promised him it wouldn't hurt if he sat very still and watched the TV.  When it was over, he agreed that I was right!  I don't think he could believe that he didn't even feel it.  Thank goodness!

After all our appointments we met Ga Ga, Papa and Kerigan for dinner at Texas Roadhouse.  We also stopped at Target to pick up a couple new toys for Andrew.  He has been waiting for months for the new Ninja Turtle toys to hit stores, and I have been searching for them around here with not much luck.  I found one at Walmart, the last one and I grabbed it right before someone else!  I had stashed it away for when he was in the hospital.  But I was so glad we found the other two that night at Target!  He could not have been more excited.
A sweet heart mom friend had sent an email gift card for Andrew to pick out a special toy, we were so grateful!  And I think it was definitely meant to be that these toys were in stock that night!

After dinner we went back to spend some time at the hotel.  We love to take Andrew to the hotel with the waterslide!  It is so fun.  Normally the water is ice cold, but this time it was seriously like bath water.  It was awesome!  The kids had a great time, and Andrew took to the water just like a fish!
Love this picture of daddy with his kids!  They love swimming with him- he's fun!
Kerigan was just as happy as a clam the whole time, smiling and loving the water!
Andrew went down the slide with daddy first, and then realized he could do it himself, and he never stopped all night!
I told him to stand for a picture, and the first time he stood for me he covered up his chest.  This just broke my heart.  Lately there have been a couple of times where he has not wanted his chest to show.  I think he is just getting to that age where he's maybe embarrassed about it a little bit.  We have always taught him to be proud of it, and it shows how brave he is.  But so far, he's not buying into it.
Wild man on the slide!
Then he'd take off and run right into the pool!  Ha!  His face just shows how feisty he is!
And this picture just makes me laugh.  My mom wanted to be "blurred" out, so I obliged.  But I couldn't not post this of Kerigan's face.  She decided since Bubba was jumping in, that she wanted to also.  She wasn't scared a bit!
This was her after she jumped.  Do you think she liked it!?  Ha!  I think she's all ready for our trip to the Great Wolf Lodge this weekend!
The only time she cried was the first time I took her on the slide.  I think she was just scared at the end when she went under a little bit.  Andrew kept going down so much that she was acting like she wanted to so I took her down again, and then she loved it.  Craig took the pictures, he obviously needs some camera lessons (the basics, like centering photos!  Ha!) but my girl was smiling when we came down and I had to post it!
The kids always have fun in the room too.  We brought some toys and Kerigan had a blast.  She's so funny- she loves to sit like this and roll the ball back and forth!
And the best part about hotels??  The free cookies in the lobby! (and yes, she won't go anywhere without her Cinderella shoes.)
Getting sleepy with daddy.  I love this picture of her because it just describes her "going to bed" look perfectly.  Hands messing with her hair, paci tightly in mouth, leg crossed.  Ha!  That's how I know she's ready to sleep!
After a short time she was cashed out... daddy too!  Ha!  I think she may be officially done with her pack and play.  She won't fall asleep in it.  We move her to it but she always wakes up in the middle of the night when she's in it and she's not happy!  So we always end up with her in the bed anyway.  Luckily, it's only when we are on trips.  She does great in her crib at home!
Andrew stayed up late for a special trip to IHOP with Ga Ga and Papa.  It's become a tradition before his caths since he can't eat after midnight- after swimming and a bath, he gets in his jammies and they just walk next door for pancakes (it is right next to the hotel!  Perfect!)  
The next morning came too soon and we headed to the hospital bright and early for his cath.  He reluctantly got in his robe but wanted to leave his Ninja Turtle pj bottoms on- ha!
He just stood here and smiled at me like this without me even asking him to!  So sweet!
In the waiting room he was fascinated with this model of a heart.
Papa showed up with this wheel chair and the kids had a blast in it!  We all took turns wheeling them around the hallways while we were waiting to go back.

This picture just speaks volumes to me.  When they called us back, they let both Craig and I go back with him this time (depends on who the anesthesiologists are).  We were walking in with him and he stopped, put his hand up and said "Stay right here."  For the first time, he would have walked into that cath lab all by himself.  It just made my heart melt into a puddle.  He didn't need us anymore.  But we went anyway.  Because we needed him.  I took this picture of him on the table, and his face is so brave.  We talked about how brave he was the whole time.  Afterwards he said to me, "You were right!  I was brave!"  My sweet, sweet boy.

The cath took about 2 hours, which wasn't too bad at all.  We waited right outside the cath lab in the waiting room where Andrew wasn't very far away from us.  This is pretty much how we entertained ourselves after grabbing a bite to eat...
Ha!  Is it sad that she knows how to work my phone and she's not even two??
Daddy made us all laugh with the mouth off app!  Ha!
What did we ever do without social media??  Ha!
After the cath the amazing Dr. Divekar came to talk to us.  It was so sweet, Kerigan took his hand to walk over to look at the fish.  We just love Dr. D because of how personable he is.  He is so good with kids and loves to tease, which Andrew just loves!  From the first time they met when Andrew was just a baby, Andrew bonded with him and we are just beyond blessed that this man is the one working on our son.  I already told him he better stay put or we will be following him wherever he goes!  Ha!  I am to the point I wouldn't let anyone else touch Andrew!
Basically, this was one of those times where I feel like things are the same as when we went in.  I think overall, things are improved from last time, and he was very positive that things were improved from the first time he saw Andrew at 9 months old.  His branch PA's are just very narrow, and therefore the vessels beyond are just hair-like and not growing much.  They are not able to place stents in them because they are too small, and there's no miracle medicine that can help.
Things were rough coming in the recovery room this time.  Andrew was very angry and yelling to let him out of there!  I knew the anesthesia was making him that way, but it was hard to watch.  He vomited about three times, which he hasn't done the past couple times so I was concerned.  He was just so uncomfortable.  Finally they decided to give him a little more sedation, along with a drug to help with nausea.  This seemed to help him relax and calm down a little.
So basically, he will just have to keep having caths to try to balloon the branch PA's to help with growth beyond them.  This time there was a narrowing just past the stent, which he was able to balloon to almost the same size as the stent.  This is good news, however the pressure didn't come down at all.  He didn't seem discouraged by that, in fact he said that he didn't expect it to right away.  But last time, it dropped drastically, so I was hopeful that it would again.  Another problem with stents is something I didn't even know- that tissue grows inside them, which can cause the narrowing to return.  That is why stents are not always ideal.  I discovered this when I asked why they don't just put another stent in the narrow spot beyond the current stent.  Rather than wait for it to narrow again.  So news flash for me... stents aren't a fix all either.
 Basically, it is a balancing act.  We are literally on a roller coaster with Andrew's heart.  There are many ups and downs, and we just have to take things day by day.  We have to be glad when we hear the word "stable," even if stable means not as good as it could be.  Sure, it could be better.  But it could always be worse.  And for that, we choose to be grateful.
Andrew perked up when "Perky" came to visit!

And the reason for my lack of posting... do you notice the blue curtain on the right?  Yep, that's a double room folks.  Six years of procedures and surgeries at this hospital and we've never once had to share a room.  I guess it was our turn.  They put us in a room with a crib, which concerned me right away.  Sure enough, a baby came rolling in a few minutes later.  And it screamed the entire day.  I am not kidding.  All.day.long.  Screamed.  Loud.  In my moment of madness, I did say a prayer for this baby, because I did feel bad for it.  But I also felt bad for us who had to sit and listen to it.  But especially for Andrew, who needed to rest.  I was livid that they would put a six year old in a room with a baby.  There was an older girl next door but apparently at such young ages we still have to be concerned with gender differences.  Even though there are curtains.  And our eardrums needed a break.  Seriously.  I complained enough times that they decided to discharge us, rather than make us stay all night.  This was a good thing because there was no way I was staying overnight in that room.  So they came to the room to do his echo, and took us up to X-ray.  And said good bye.
On a wagon ride to X-Ray.  Kerigan said "this is fun!"
He relaxed with Kerigan a little bit before the nurse came to take his IV out.  Luckily she was napping a good portion of the day back at the hotel with Ga Ga.  Andrew asked several times if that was Kerigan screaming.  Poor baby.  He watched about 4 movies with the volume cranked and his hearing aids out so the screaming wouldn't bother him as much.  
Once he perked up I gave him my surprise- the last Ninja Turtle toy he had wanted.  He was beyond excited.
The nurse gave him a "bath" with a shampoo cap and some wet cloths before we left since he couldn't take a bath for a couple days.  I love the shampoo cap.  Andrew?  Not so much.
Playing with all his toys while waiting to be discharged.
We went back to the hotel again for the night, just in case we would need to go back to the hospital for some reason.  Andrew wanted to swim again- poor thing!  We had to distract him, which was pretty easy.
He rested in the bed at the hotel with daddy and watched more movies.  We all agreed it was much more fun staying there than in the hospital!
The next morning, the kids had to jump on the beds!  Yes, even after Andrew had a cath the day before.  Nothing really holds him back!
My favorite part was when we were talking to Dr. Divekar and we were discussing Andrew's activity level.  I made the comment how amazing it was that he just acts like a normal kid and you would never know he was a "heart kid."  Dr. D looked at me strangely and said "He's not a heart kid!"  
I was a little confused.  He looked at me and said again, "He's not a heart kid.  He just has issues."  Ha!  I love that man.  If he wants to call them issues, I'm more than happy to oblige.

And he gave us 18 months between caths this time.  So unless something drastically changes, this heart kid kid with issues won't be back in Iowa City for a year and a half!  And in the meantime, look out... because Andrew has more energy than ever!

We are blessed.

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