7.31.2013

Pre-Fontan Cath Details & Our Fun Night Out


Monday afternoon we headed down to Charleston to squeeze in something fun before Derrick's cath on Tuesday.  We asked him what he wanted to do and he said he wanted to watch a movie on the "big tv screen."

We decided on Turbo.  After sanitizing the seats like a crazy lady, we settled in for the show.


Justin had to put his leg on D's seat so it wouldn't keep closing on him.  I couldn't stop looking at how adorable these little legs were on that big seat.


It didn't take long before he was ready to crawl in my lap.  I happily snuggled him through the whole movie.


We LOVED Turbo!  It was by far one of the cutest. movies. ever!  He's still talking about it and asking when we can go see it again. 


When the movie ended Derrick ran to the gumball machines (while I'm running behind him yelling, "No! Don't touch!!"  If anyone was around they probably thought I was nuts because I must have said that 30 times at the theater.)  That sweet boy was so disappointed when he realized there were no bouncy balls.  He turned and looked at us and said, "I wanted to get a bouncy ball for Jenny Kate so she would be happy."  How can you say no to that?  So off we went to K-Mart in search of a bouncy ball machine so Derrick could "make JK happy."

They didn't have a bouncy ball machine either, but they did have these:

Derrick was so excited that he could take bouncy balls home to Jen!  (JK has this weird obsession with bouncy balls for some reason.  :)

Derrick had requested that we get a hotel with a big bed that we could all sleep in together.  Once we got there we hung out a little then tried to get some rest.  We enjoyed snuggling in the big bed with our little guy.

The next morning we got up bright and early and headed to the hospital. 


Derrick helped them do an EKG,


put on hospital gown which he HATED the entire time he wore it except in this very moment when I snapped the pic,


decorated Dr. Marshall and everyone within reach with Scooby Doo stickers,


played Temple Run with Daddy,


and had an echo.


By the time 10:30 rolled around Derrick finally realized he was hungry.  We were really hoping that he wouldn't ask about food or drink, but as the time continued on it was bound to happen.  I took him to the bathroom and he said, "Mommy, do you have some bunnies in your bag?"  "No, buddy.  You can't have anything to eat before your cath," I told him.  "But Mommy, I want to go home and get some bunnies!" and he melted.  In the bathroom, he let it all out.  I think his tummy and his nerves got the best of him and he was done.  Thankfully when we got back to his bed the nurse was there with a dose of Versed and it was almost time to go. 


The anesthesiologist did a great Scooby so Derrick thought he was cool.  He had requested that we video him after he got his silly medicine, so we did.  Once he got back and wanted to watch it he was mad that he didn't see his head spinning around.  Ha!


After that they were off.  As they pushed him past Justin he reached out and said, "No Daddy" then started laughing.  He tried to get upset but couldn't.  That makes it easier to let him go.  The lady from Child Life walked beside him with an iPad showing him Scooby all the way down the hall.  No matter how content though, this is a hard part to watch...

We rushed off for food.  Gosh it's hard to wait until 11:00 for food or drink!  We made a BraveHEART Basket delivery then went out to the Horseshoe for some fresh air and to kill time.  We got kind of bored. 


We got an update that IVs were placed, breathing tube was in, and vitals were good.  By the second update the nurse said they would be "rolling" in the next 30 minutes!  Quick cath with no interventions needed.  We were happy!  At 1:15 we were back with our boy.



The goal was for him to sleep until about 2:30.  After a cath you have to lie flat and still for 2 hours.  At about 1:20 he woke up and started trying to sit up.  He was coughing and mad!  They gave him another dose of something to help him sleep and he finally calmed down.  After about 10 minutes he was sleeping so well that his respiratory rate dropped really, really low so his nurse went to move him to help him breathe a little easier.  As soon as she touched him he had a fit!  He was awake, confused, and angry!  We had to keep him flat and still, so we were hunched over his bed trying to keep him calm for the next hour and a half.  He would close his eyes for 10 seconds then open them and cry.  He was junky and raspy from the breathing tube and he was so dopey because the anesthesia hadn't worn off and he had gotten another dose of sleeping meds but was refusing to sleep.  We made it through the next hour and a half (finally!!!) and he was able to sit in my lap, where he finally went to sleep for a little bit. 

He was back and forth between my lap and his bed, but still mad.  Gosh, he was a mess!  We decided that those five hours of recovery were some of the most mentally exhausting hours we've ever had.  He finally got to eat.  We ordered him sausage, eggs, and ice cream and he ate every bit of the sausage and eggs and wanted more.  He was starving!  He went back and forth with being ok and crying, and started getting hysterical about his eye hurting.  Such a strange side effect from a heart cath...eye pain!?  We did some saline drops, removed his IVs as he had another meltdown, and were finally sent home.


This boy was a MESS!


In the car he had another fit and was crying that his eyes "didn't work" which freaked me out!  After I finally got him to tell me that he could indeed see, we convinced him to go to sleep to help his eyes. 


He slept a little while and was a lot less dramatic.  We decided to make a pit stop on the way home for his favorite treat.  He insisted on going inside and he ate an entire doughnut, which may be a record for him! 


We made it home and he was pretty much back to normal.  He was happy to give JK her bouncy balls and I think pretty glad to see her.  Thankfully we all got good rest last night and today was pretty much a normal day.  Derrick woke up coughing this morning and I took him water and he went back to sleep until 9.  He's been in a great mood all day and seems to be feeling completely fine.  We took his bandage off a few hours ago and his site looks good.  Bruised, but really good.  He keeps having me look at it, but I don't think it's bothered him at all.

He got mad earlier that we wouldn't let him ride his bike, so he reluctantly settled for the tricycle instead.  I'd say he's recovered quite well from this "little surgery."  Yay!!

As Justin said yesterday, they said he was a good candidate for the Fontan, which was a huge answered prayer.  The doc said his pressures were great and that he was clear for surgery anytime within the next year and we could do it whenever it suits our family best.  Lets hope the surgical calendar is clear enough to do it soon because this mama can't have it looming much longer!  We're waiting for a call from the surgery scheduler after they decide which surgeon is going to take him.  His surgeon who did his first two surgeries moved to London :(  If we don't hear something by Friday morning I'm calling them myself!

Thank you all so much for your prayers for our family and our boy!  They were most definitely felt and answered.  We have such a great support system and we couldn't ask for better.  We were talking on the way home about how we had an eerily peaceful feeling yesterday, and we know it was from your prayers.  Thank you, thank you!! 

PS It's driving me crazy that all of the pictures are so blurry...sorry!!


7.30.2013

short story more later


He's back!!

Right now Derrick is resting and we're *really hoping* he continues to sleep through the next hour, although as I typed that he cried out...well strike all of that. He is now wide awake and crying. We finally have gotten calmed down because it has been two hours since the Cath and he is in Shannon´s lap.



We will post more details later, but, everything looked good and they did not have to do any interventions! Pressures are where they need to be and once they determine which surgeon
will do the surgery, we can schedule a date with their Secretary. Thanks for everything and please keep praying he stays calm and doesn't hurt. Sorry for the lack of glamour of this post as Shannon is unavailable to type right now.

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7.28.2013

Pre-Cath Specifics

Thank you all so much for your support and prayers for Derrick and for us.  There's no way I could ever express how much that means to us.  It gives us great comfort and hope to know that he has so many people praying for him.

As promised (y'all are shocked that I'm on time, aren't you? ;), here are the specific prayer requests for his cath on Tuesday (I'm sure there are others/more, but this is all I can think of right now and should be plenty sufficient!):
  • That his cath goes smoothly.  That his body handles the sedation, intubation, and the procedure without any issues.  (I'm guessing he'll be intubated, he was for the other two, but I'm not 100% sure that will happen.  But just in case...pray it goes well!)
  • That there aren't any surprises in that complicated little heart, and if there is anything different or unforeseen, that it is noticed so there are no surprises when they go in for surgery.
  • That the pressures in his lungs are optimal for surgery.  Actually, that everything is optimal for surgery.
  • That he is calm and that "little surgery" doesn't make him terrified of "big surgery." 
  • That his doctors and everyone involved have clear minds, steady hands, and loving hearts.  That they take great care of our boy and are on their A-game.
  • That he handles the no eating or drinking after midnight without much of a fuss.
  • That Justin and I are calm as we lead up to everything, especially when handing him over, and that we are patient as he comes out of sedation and recovers.  As history has it, Derrick coming out of sedation isn't pretty, so we may need an extra dose of patience.  
  • That we all remember Who is really in charge of all of this, and remain thankful that this is even a possibility for him.
For those of you who are reading this and have no idea what a heart cath is, here's how our paperwork describes it:

 "Heart catheterization is done by inserting a long, narrow, hollow tube called a catheter into an artery and a vein, usually in the thigh near the groin and passing the catheter up the blood vessel into the heart chamber.  Movement of the catheter up the blood vessels and inside the heart is observed on x-ray flouroscopy.  Once the catheter has reached the heart chambers or main blood vessels, samples of blood are withdrawn through it for oxygen analysis and measurement of pressures.  This is followed by the injection of iodine-containing contrast x-ray dye so that movies may be taken of the heart.  Electrical recording and stimulation of the heart may be performed using different catheters if there is a known or suspected problem with the heart rate or rhythm." (MUSC Children's Hospital Pre-Cath Paperwork)

Tuesday is "just a cath," not the big open heart surgery that's looming in the near future.  Of course it doesn't come without risks, but we're confident that he will be covered in prayer and will come through this like a champ.

The plan is to go down tomorrow afternoon and do something (germ-free and) fun.  If nothing else, we'll have some yummy dessert and watch movies in our hotel room...which sounds kinda perfect too.  :)

Thank you so much for your love, support, and prayers. 




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7.25.2013

Pre-Isolation Celebration

It's here...and so far they haven't called to reschedule us.  Yet.  {They better not!}  I was upset when they changed D's cath date back in May, but I have to admit, I've sure enjoyed having the summer for us to all be together and fully enjoy ourselves.

Sunday was our last day at church, and it was a little more emotional than I figured it would be.  It will be a while before we're back at church and that makes us sad.   

After church D requested two tacos.  I knew what that meant.  Ugh.  Taco Bell.  I can't really stomach the thought of that place anymore, but this boy LOVES their tacos.  He always requests two tacos, so I figured at least the calories are high and he needs them, so I gave in and got him the tacos.   He was in heaven.

 After lunch he insisted on trying on his new shirt and proudly came downstairs all dressed.  He even insisted that the shirt be tucked in.  :)

Tuesday was our last day of freedom so we decided to take advantage of the day.  Justin took Derrick to his 4 year well visit (26 lbs!) and JK and I went to the gym.  She got ready herself.  {Y'all may not believe it, but clearly my kids have a spot on Fashion Star in their future!}



JK enjoyed gym time with her bestie.  It will be a while before that happens again too. 


Once we got home we grabbed the boys (sweaty hair and all...clearly!) and headed out to lunch.  We got every body's favorite, San Jose!  Derrick has the cheese dip covered mouth to prove it.  :)




After lunch we cashed in on some Build A Bear gift cards the kids had gotten for their birthdays.  Derrick knew ahead of time that he was building a monkey and once Jenny Kate saw they had a cat her decision was a piece of cake.  That girl loves cats right now!

Derrick stuffed his monkey.

Jenny Kate wouldn't have anything to do with the stuffing, but she did kiss the heart for her. 

I never did get pics of them with their new friends, but this is Dr. Marshall.  We have no idea where the name came from, but Dr. Marshall will be "going into surgery" with Derrick to take care of him.

Jenny Kate was far more interested in picking out accessories for herself than she was in dressing her friend, "KeKe."

KeKe had to take a spin around the store in this cute pink car,

and so did Dr. Marshall. 

We had such a fun time!  KeKe has been by JK's side ever since she got her home.  Dr. Marshall hasn't been as loved because Derrick doesn't like that he's wearing scrubs.  A little change of heart, I guess.  He wanted him to be a doctor, but I guess he doesn't want a doctor at home with him.  I guess Dr. Marshall needs some street clothes. 



Finally, we headed to Coldstone for dessert.  It was so cute how JK put her arm around Derrick as they made their selections.  :)


Pink Lemonade for Jen,

oreo for D,

an ice cream cookie for Justin (this must be where JK gets her lovely photo faces from)

and chocolate with Reese's cups for me.  Yummo!

We had a super fun time out, and now we're in for a while.  We'll head down to Charleston Monday and Derrick is first case in the cath lab Tuesday.  Ugh.  At least we still have a weekend to enjoy before it's time for that.

I'll post some specific prayer requests on Monday because we sure would love your prayers!

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7.19.2013

Lake Hartwell

A few weeks ago we made our first trip to Lake Hartwell, GA to spend the weekend with some of our favorite friends.

Andy knew something was up and he didn't go far as we were packing.  He was determined to go!  Poor guy refused to get out of the car so we drove him to our neighbor's house to make him feel better. 

 This cute little house was the perfect space for all of us and it's 25' deep water at the end of the dock was awesome!  Justin tried and tried several times to make it the bottom but his ears just wouldn't let that happen.  That's some deep water to be back in a cove!  It was great because I cannot stand for my feet to touch the bottom of the lake, and let me tell you, the adults did a lot of floating in that water! :)

We spent the weekend fishing,

relaxing,

and soaking in the beauty.  

 We made a new friend, "Jazz" or "Shirley" or whatever felt appropriate to call her at the time,

and we loved on her a lot.  Especially JK.  She was a big fan!

She even followed us inside and refused to leave!  The kids were convinced somebody was taking her home and she was cool with the idea. 

Poor Jazz.  She thought she'd hit the jackpot.  The kids were so sad when they woke up the next morning and found out she had moved on. 

Derrick caught his first fish, which was hysterical, considering he was the size of a minnow.  

Two inches may have been an exaggeration! :)

Jenny Kate got bored with the fishing pretty quickly

and preferred to throw rocks in the water while everyone else fished.  

This was most definitely her favorite part of fishing!

 Despite JK's antics there were slightly bigger fish caught.
 
The boys didn't give up,

and now we have a slightly obsessed little fisher on our hands.

They finally did catch a decent one!


We did lots of swimming,


and lots of worm carrying while shouting "worm boy, worm boy" as loudly as possible.

Over and over.  While also stealing people's shoes.


Both nights we had dance parties.  They were SUPER fun!!  Anytime Jenny Kate sees a glow stick now she thinks we're supposed to be dancing.  :)  

 The kids were mesmerized by the sparklers,

and I must admit, there is something magical about them.  

I couldn't stop looking at the sweetness of their little faces in the sparkling light.  

Precious!
 
Sunday morning before leaving we had popsicles for breakfast.  This breakfast of champions was taken very seriously.

 
We had an awesome weekend and sure were sad that it was over!  We're thinking this trip will be an annual event, and we can't wait until next year! :)

In fact, we had so much fun that this guy was out within minutes of getting in the car.  Gotta be the sign of a great trip!


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