Wednesday, October 5, 2011

the rest of the story {the FUN part!}

Wow.  I am so overwhelmed by the amount of support we have recieved after my last post.  So many emails, comments and prayers were sent our way, and I appreciate it so much.  Many of you asked if we had thought of getting a second opinion, and honestly, I hadn't until I thought about it some more (thanks to all of your suggestions).  We have always been very confident (and still are) in the University of Iowa Children's hospital in Iowa City.  We believe the doctors there are some of the best in the nation.  However, I intend to do some research on Andrew's particular condition, and believe me, if it leads us somewhere else, we will look into it.  I refuse to hear the words "there is nothing more we can do."  Not when it comes to my baby.  We haven't heard those words yet, so until we feel a pull somewhere else, we are staying put for now.

Now, onto the rest of our time in Iowa City.  We stayed at our favorite hotel (for those who wonder, because I have been is the Comfort Suites!) they have the neatest pool with a 100ft. waterslide.  Andrew just could not get enough of it.
Even though the water was pretty cold...
(Again, proof that I got in the water, AND went down the slide too!  Ha!)
Daddy got in on the fun too, but then we learned that Andrew was big enough to go down all by himself, so he jumped at the chance!
After coming down on his tummy and backwards the first time (just like he did in Wisconsin Dells!) he soon figured out how to stay upright, and he was so proud of himself!
He loved how the water pushed him coming out of the slide.  Once he got down, he'd just play like this for awhile before going straight back up again!

He also had fun jumping in the water to daddy.
We had to laugh because Andrew ate 2 meals this night!  We all went out for dinner at our favorite, Texas Roadhouse.  Then after a long swim, Ga Ga and Papa took Andrew out to IHOP, which is right next to the hotel.  This was about 10:00pm!  We figure there was also no harm in letting him stay up late since he'd be sleeping the whole next day! (Oh, and don't you love how we let him wear his pj's too?  Ha!)
 My mom said he ate a TON of eggs and all his pancakes!
We were trying to squeeze as much food as possible into him since we knew he was second case the next day and wouldn't be able to eat.
Look at him shovel it in!  Ha!
Watching one of his new movies with Papa (around 11:00 now!)

The next morning we got to take our time a little bit more since he wasn't first case.  I felt incredibly guilty sneaking down to the hotel continental breakfast to eat before we left.  They have the best waffles that Andrew loves.  I could have cried sitting there eating it.  When we got to the hospital they had the nerve to roll the food cart right into the waiting area.  And there was a kid eating a cookie right in front of him.  Seriously?  I get that not everyone can't eat, but it just seemed so unfair.
Luckily he was entertained!  We are all getting such a kick out of him lately because he LOVES my new iPhone.  He is always wanting to play games on it and it totally entertains him.  This is one of the huge reasons I wanted an iPhone, and it did not disappoint!  The best was when mom and I took both kids to the mall the other night and this entertained him almost the whole time so we could shop!
He was being so silly, even though he was super hungry.  We went up to the library and museum and looked around and he was playing dress up!  Ha!  He thought he was funny, giving himself hair and "dressing up like a girl!"
When we finally got called in for the cath, we were waiting to see the doctor and Andrew was completely fascinated with this model of a heart.  I think he thought his heart was heart shaped (didn't we all think that at one point?)  Ha!
I thought it was so neat to show him the parts of his heart and what it actually looks like.  This also entertained him for a while!
Andrew begged Ga Ga to go in the cath lab with him when they put him under, but she didn't think she could handle it.  I told her she couldn't cry in front of him or it would scare him!  So he settled for mommy going in with him, but he wasn't very happy about it!  He gave Ga Ga a huge hug and leaned his head on her and said "I'll be back," in the saddest little voice.  I think that made Ga Ga cry even more than if she had gone in with him!

So I went in with him and he was so good.  He got to hold the mask himself this time and the cath lab nurse asked him how it smelled, so he put it right up to his face.  He sat on my lap and just waited to get sleepy while I kept telling him how brave he was and how much I loved him. 

Trust me, we don't laugh too much when Andrew is in the cath lab, but I had to chuckle at all of us sitting there waiting and working on our computers!  Haha!  I think people that came in thought we were nuts!
 The cath lab is right in this office where we were waiting, and we never like to get too far away so we usually don't leave during his caths. Once in a while we grab a quick bite to eat but it is always right after they take him so we have some time before they get started.  I like knowing Andrew is as close to me as he can get.  It is funny, they always tell us to get out and about, go to the gift shop, grab a bite to eat, etc.  I think they try to get rid of us!  Ha!  Dr. D laughed and said there are two extremes- he had a mother one time leave and go to the mall and get drunk!  Omg!  Who does that??  I'm proud to say I am the opposite extreme (although I wouldn't pass up a drink!  Ha!  But I'd sit right down on the floor by the door if they'd let me!)
Most of the pictures of Andrew in recovery I posted in my last update, but here is another one.  The first thing he wanted was water, but of course they wouldn't let him have it right away so he had to settle for ice "ships!"  Like I explained already, Andrew woke up very calm and didn't fight us this time.  He was pretty sad right afterwards, into the evening and even into the next morning.  He only perked up after all his tests were done and he could go to the playroom.
When we got back from recovery and into our room, we were so surprised to see this sweet person waiting to see us!  This is Jamie, she was Andrew's best nurse on the floor after his surgery in March.  We loved her so much.  She was our night nurse, which is so important.  I can't even explain how great she was to us and to Andrew during those rough nights after his surgery.  He was not a happy camper, and she always cheered us all up.  She is no longer working there (SO sad!) but she just passed her test to be a nurse practicioner and is getting married so she is moving to Minnesota.  We will miss her!  She loved this little dolly, and I told her I wish she lived closer so she could babysit!  Ha!
Andrew was pretty out of it when she was here, but she left him a sweet note on his board!
This moment was so special to me.  My sweet daughter watching over her big brother.  She was so interested in what was going on and just staring at her brother.  These two already love each other so much, it is so amazing.  I know Kerigan is going to grow up having an appreciation for things, because she will have been exposed to so much by watching her brother go through all of this.  They are so blessed to have each other.
In my last update I also mentioned Andrew having some genetic testing done.  He had his regular echo the next morning, but he also had a whole string of other tests done.  They did a kidney ultrasound and took spinal x-rays.  We have not heard any results, but like I said, I am not worried.
Smiling because he was all done and ready to hit the playroom!
Well, after he finished his pancakes...

I thought his Mater slippers were so cute sticking out from his tray!
He wanted to get dressed in his Batman jammies and I made him walk to the playroom.  He wasn't thrilled about walking, but I told him they wouldn't let him go home if he wouldn't walk!  So he walked all hunched over like a little old man the whole way!  Ha!
Found lots of new toys in the playroom to play with...
While daddy stayed back with this little sweetie.  This picture sort of gives me the creeps though, because I think I have already seen one child of mine in a hospital bed... I hope I never have to see this for real!
But she was looking at her daddy so sweetly!  It was sure a different experience having her along with us this time.  I wasn't sure how it would all work out, but we made it work, thanks to Ga Ga and Papa!  They just stayed in our hotel room an extra night and took Kerigan back with them while Craig and I stayed with Andrew.  It was my first time being away from her overnight, and it wasn't easy.  It was the first time I really felt torn between my two children.  I wanted to be with her so badly, but I knew Andrew needed me.  All I could do was hope she'd understand.  And it's not like I was worried she wasn't getting spoiled to pieces and loved on enough!  Ha!
Andrew got asked to go to the playroom upstairs for a dinosaur craft with some other kids, which was nice.  I thought it was good for him to see other kids with IV's in their hands like his.  He wouldn't use his right hand because of the IV, even though it wasn't hooked up to anything!
This is Andrew's miracle worker, Dr. Divekar.  We just love this guy!  He really has a positive attitude, but he also tells it like it is (which was hard to hear this time, but he didn't leave us without giving us a glimmer of hope).  I always appreciate his sense of humor and the connection he makes with his kids.
And by the way... this is why we go to Iowa City for all of Andrew's surgeries and procedures...
I had to laugh as we were packing up to head home.  Seriously?  We were here for one overnight! 
We were just happy to be headed home!

When we got home, we all crashed... well...almost all of us!
We are glad his cath is over... but I now realize I can't say, "Whew, well we got that over with!"  because there is always going to be another one.  We head back this spring to see how things are looking.  Between now and then, we thank you for praying for Andrew's tiny arteries to grow.  Your prayers are so important, because really, there is not much else that can be done.  Thanks again for all your support and prayers during this difficult experience. 

If you missed my update on the results from his cath, you can read it here.

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