10.31.2013

Throwback Thursday :: Halloween Style


Halloween 2009
Sweet Pea

Halloween 2010
Little Lion

Halloween 2011
The Cake Boss 

and his little cupcake.

Halloween 2010
The zookeeper
and his wild zebra.


Halloween 2013
Spiderman and the spider that bit him.  :)

More pics from Halloween 2013 coming soon.  We're off to get some CANDY!

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10.29.2013

Four Weeks

It didn't even dawn on me until after I took this picture that today Derrick is four weeks post heart surgery number three.
FOUR weeks.  

We decided to get back to running and hit the pavement on this beautiful, 70 degree day.  I thought I would die after the one mile, but the kids were chomping at the bit to get out of the stroller.  We let them out and they took off. 

He ran longer than JK, which has never happened.  He ran almost a quarter of a mile, walking for a few seconds only a couple of times.  I really thought I'd never see this.

My heart is full.  Overflowing.

Four weeks after open heart surgery...my boy who's never been able to run like this.  Who says God isn't still in the business of performing miracles?


O LORD my God, I called to you for help and you healed me.  Psalm 30:2

10.20.2013

First Post Fontan Check-up

We had our first post Fontan check-up with Derrick's cardiologist Friday.  Already behind.  Sorry.  :)

He went in with pretty high anxiety.  We aren't exactly sure if he has a stitch in his middle chest tube site, so we told him there was a possiblilty he would have a stitch removed.   We've always believed in warning him when we know something will or may happen, but this time that was the wrong thing to do!  All of that hospital stuff was way too fresh for him to be calm about anything that could potentially hurt.

After about five minutes of being in the room we gave him a ring pop and that did the trick.  No more panicking, just a calm boy with sticky blue lips.  He always chooses blue...especially at the cardiologist.

Dr. S said he looked great, sounded great, and his sats were 96!  Yes, NINETY SIX!  In case you don't realize how big of a deal this is, he hung out between 78-82 before surgery.  Oxygen saturations of 95 are considered "normal."  Your muscles and body are getting enough oxygen at 95 to be able to perform like they're made to.  Functionally, Derrick is working with half of a heart.  We honestly never thought we'd see him pull numbers like that, even though they said it was possible after the Fontan.  We have only used the pulse ox once since we've been home, and that was the night we came home, and he was at about 93.  The pulse ox at the cardio office seems to run a little higher than the one we have at home, but who knows which one is really right??  

If indeed the 96 was accurate, this most likely means D's fenestration is closed.   (The fenestration is kind of a pop off valve that allows blood to flow into the atrium if venous pressures are too high.)  At first I thought, "Oh, no!  His fenestration is closed!  Not good."  But really, if his fenestration is closed it means he wasn't using it.  It means that his pressures have been low enough for the blood to flow without too much resistance and that his body is happily tolerating the new Fontan circulation.  Definitely a good thing!  We'll just keep watching and see, but if it did close on it's own that means he won't have to have a cath in a year to close it!  One less procedure would be a great thing! 

We had a happy cardiologist, which definitely equals happy parents!  We go back in three weeks for another follow-up.  We'll go to the pediatrician next week for a baseline check and to figure out if there is actually a stitch that needs to be removed.  We learned our lesson though, we won't be talking about that one ahead of time.  Not this time!

After we left Dr. S's office we went by Yoghut for a fat free treat.  Well, a possible fat free treat.  I guess adding Reese's chunks to fat free yogurt doesn't keep it so "healthy" huh?  Anyway, D could pick almost any flavor he wanted and there was a wide variety of toppings on the safe list.  He chose chocolate and vanilla yogurt with gummy frogs.

He ate zero gummy frogs and about 5 bites of his frozen yogurt, but it was a pretty normal experience, so it was worth it just for that.  He's having a hard time with being told he can't have certain things.  I guess it's extra hard to deal with when you've had people shoving food in your mouth your entire life to try to get you to gain weight, then all of a sudden you can't have any of that same food!  We're trying for as much normal as possible, and he's really doing well with it overall.  It is funny to hear him ask if something is fat free though.

Gotta love the blue sucker stained lips of this heart baby.  :)

That's about all for now.  We're just mostly hanging out at home, trying to get things done before Justin goes back to work.  We've been out some but no highly crowded areas for us yet.  Gotta try to keep this boy well as long as possible!  :)

This is totally random, but it's been the hit around the Carter house for the past few days.  If you haven't had the pleasure of this viral sensation on YouTube, please enjoy.  It's been stuck in my head constantly for three days, but it is catchy and the kids LOVE it.  You can thank me later.  ;)




10.17.2013

Home, Sweet Home!

I have never, ever been as excited to go home as I was yesterday!!  We were in the hospital for 16 days after Derrick was born, and when they told us it was time to go we were terrified! This sixteen day stay we were begging to go home! 

I can't resist posting this picture of leaving day. He was all over 8D as we got ready to leave. He was a totally different child!

D took his neighbor one of his balloons before we left. She told Justin Derrick was her "best friend here." So sweet!! We really hope she ended up going home today!  

Bye bye MUSC!!


When we got home we were greeted with some fun surprises. We also had a surprise of a big pumpkin and beautiful mum that i didn't get pics of.  I'll also have to take pics of a special little something D had waiting. We seriously have the best friends ever!!

(Don't mind he dead plants.  We don't use the front door very often and I forget how bad the front porch looks!)

Justin's dad brought JK home but he didn't tell her we were there. We hid then jumped out to surprise her and she was thrilled to see us!!!  I've never seen her so excited before.  She ran to me and said, " I missed you mommy! Did you paint your nails? Can we go to your bedroom and paint my nails?"  Ha! 

She has been very concerned with how D has felt and asks him if he's ok every now and then.  After about five minutes of us all being here it felt as if we'd never left. They fell right into their normal playing-fighting-playing routine as if they'd never been apart. 

Bedtime was a little rough, but we expected it would be. Derrick did pretty well, but Jenny Kate...man she put up a fuss!  
Neither of them had slept alone for almost two and a half weeks and I guess considering the circumstances they did ok.  He did anyway.  I'm really hoping tonight is better!

Derrick has been a lot more low key today. Yesterday afternoon he went wild, just being so happy to be here.  This morning he woke up crying about his leg hurting.  The first thing I thought about was a clot! After looking at it and rubbing on it and asking him a few more questions we thought he may have had a cramp.  Justin called the hospital for reassurance and to check his potassium levels, but they had been fine.  They said the soreness was normal, after all, he did lie in a bed for over two weeks. We think he over did it yesterday.  After this morning he was fine the rest of the day.  A little guarded, but still running around doing a lot of what he's wanted to do.  He's pretty much back to his old self and we're so happy to have the old D back!! 

That's pretty much it for now.  We have yet to really unpack but we'll get there eventually.  We've just been hanging out, enjoying the fresh air, and trying to keep this boy satisfied with fat free foods.  I think I may document his eating here because I have a few pretty good recipes we've had so far.  It's so hard to figure out something decent that barely has any fat in it.  We have some awesome friends who have searched and created some yummy stuff that he can eat and I'll probably post it here so it can possibly be helpful to someone else, and so I can remember it myself.  :)

We have a cardiologist appointment tomorrow.  Hopefully things still look equally as good or better than they did Wednesday! I'll keep you posted.

:)

10.16.2013

Post Fontan :: Day 15 :: D's Big News

D's got something to say!



We should be on the way HOME in less than an hour. 16 days stuck here is way long enough for us! You probably won't hear from us tonight...we have lots to catch up on at HOME! :)






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10.15.2013

Post Fontan :: Day 14 :: Almost..

Great news!

They decided this morning Derrick's drainage had decreased enough to pull his chest tubes! Woo hoo!! 

Jen and Cathy, the PA and NP...the good guys and the bad guys.  :)  Derrick didn't want them to take his tubes out because he said they "pulled too hard!" :)  They're great!!  They're also the ones who give updates during surgery.  They're kind of handy to have around.
They pulled his steri-strips off since he had some pain meds in him and look at that chest!  Fifteen days ago his chest was open.  The human body is an amazing thing to heal like that!  Not a lot longer until we see that little silver line again.  When I showed him this picture he asked if the black thing was his belly button.  :)  It does look like a newborn belly button, but that's from the middle tube.  We were laughing because now he has an exclamation point!  Ha!

He went down for a chest x-ray and then had an echo.  The echo tech showed us his Glenn and his Fontan, which were really neat to see on the screen.  Lets be honest, I still didn't have a clue what I was looking at, but it was cool to "see it" and watch his new blood flow.  He was a champ, even though I forgot the ring pop!  Mom fail!

We waited all day to find out the verdict.  Dr. K didn't get up to see us until about 6:30 this evening.  Poor family waiting through that surgery!!  Anyway, when he came up he said that everything looked good, but that Derrick has a pneumothorax that developed sometime (we're not exactly sure when, but sometime after surgery).  A pneumothorax is where air gets trapped in the pleural space and causes space between the lung and the chest wall, which can cause breathing issues.  Derrick's is small, but he wants to make sure it doesn't get larger over night.  As long the chest x-ray looks good we'll be out of here in the morning!
Derrick and Dr K giving high fives.
We've done a lot of waiting today so we never did make it to the Atrium.  It's been a packing up, game playing, movie watching kind of day.  Almost every single item that was in this room is already in the car...including clothes and toothbrushes.  Yep, we're roughing it tonight! We just knew we'd be out of here today!  Oh well, it will make for an easy get away in the morning.  :) 

Please pray that the pneumothorax doesn't get any worse, but that it gets better.  He definately doesn't need anything else to have to deal with!  Thank you so much.  Looking back over these last 15 days at the list of things we've asked you to pray for is pretty cool.  Every prayer has been answered and that has not gone unnoticed.  We are so thankful! 

Here's to hoping we're bidding our friends here farewell tomorrow and getting cozy at home.  :)

P.S. Please pray for our friend Bodie.  He's our California heart buddy who we had the pleasure of meeting last year while they were here in Charleston.  He had his Fontan this summer and is still having issues.  He's going in for another cath tomorrow to see what's going on.  Please pray for answers and easy solutions for him and peace and patience for his family.  They are very special to us!

10.14.2013

Post Fontan :: Day 13 :: Entertainment

Today we are officially two weeks out from surgery.  Kind of hard to believe, really!  

Our friends Julie, Branham, and Brody visited this morning.  They brought Hungry, Hungry Hippos, which we've been playing with all day!  Julie also brought D some fat free pumpkin muffins, which was super sweet.  :)  We had so much fun visiting with them!  Thanks for coming, y'all!  I hate I forgot to take a picture!

Derrick got mail today too.  Boy was he excited!  Inside the card was $2 for a doughnut from Ms Beth!!  You know how much D loves his Krispy Kreme doughnuts!  I predict that's the first place he'll request to go when he's off his diet.  It's so funny how well people know him and his food.  Right after surgery he got doughnut money from his buddy Jack and a Taco Bell card from his friend Gammon.  It makes me laugh because now when we tell him, "No" to his favorite things he can really say he has his own money for them!  Thanks, y'all!


Today, medically speaking, has been like most of the rest.  It's just a hurry up and wait thing.  Today at least, in our waiting, we got some entertainment by Clemson's "Tigeroar" group.  Picture the Warblers from Glee and that was them exactly, just dressed in orange.  They were a nice change and they were really good, which was surprising since they're Tigers and all.  ;)  I'm kidding!

We had a front row seat. 


They hung around and chatted for a while.  At first D wouldn't talk to them, but he finally warmed up.  He had them chasing paper airplanes all over the place by the time they left. 

My boys are kind of obsessed with making paper airplanes right now. 

When we got off the elevator Bristol the therapy dog was there.  Her owner said they had just stopped by our room to visit, but we were downstairs.  D was happy he got to see Bristol after all. Seeing these therapy dogs really makes us miss our pups!

Our neighbor that I mentioned yesterday came over to play today.  Derrick really had fun with her!  They played Hungry Hungry Hippos then we all played Yahtzee Jr together.  It was fun.  It was cool for Derrick to see someone else, especially older, with a special heart almost just like his.  He had his dressings changed today and she was in here and she talked him through it.  She was so encouraging and knew exactly what he was going through.  I think he really trusted what she was saying, which was pretty neat.  They had this special little bond. 

Other than that we've just been hanging out.  Waiting and hoping that this drainage stops SOON!!  We're ready to go and we miss Jen! 

As it has been for the past few days, our prayer request is for this drainage to stop. 

Thank you!!

And PS, thank you for all of your kind words about yesterday's post.  :) 

10.13.2013

Post Fontan :: Day 12 :: Not Today :(

Derrick's favorite thing these past few weeks is to throw his hands up, cock his head over to the side with a really goofy look on his face and say, "Not today!" no matter what it is we're talking about.  He did it today for the first time since surgery.  Today that was totally appropriate.  

Not today!

And tomorrow is already out too.  He's already drained too much in this 24 hour period to pull the tubes, so now our hope is Tuesday.  Womp womp.

Bummed?  Absolutely!  To say we're ready to go home is an understatement!  However, when we were in the Atrium today it was all put in perspective.  I love the Atrium.  It's such a neat place.  Today there were more kids in there than usual and I couldn't help but notice the different equipment they drag around and wonder why they're there.  It's kind of overwhelming at times seeing kids in hospital gowns with iv poles and bandages and no hair...and they're playing like regular old kids.  

Today we made a comment about hoping to leave tomorrow and the dad of a little boy sitting at the art table asked how long we'd been here.  We told him, then I asked him how long they had been here.  "Since July."  Ugh!  I asked him a few more questions and found out that his son is having a bone marrow transplant in November and they probably won't be home before the first of next year.  Mom and dad take turns being at the hospital, working, and being at home an hour away, while 10 month old sister is back and forth between whoever isn't at the hospital and grandma.  

You don't have to look far to find someone who has it worse.

Our little friend next door is here waiting for a new heart.  She's had 3 heart surgeries and now has to have a transplant.  She is the most chatty, sweetest, smiliest little thing as she wheels her oxygen tank around behind her.  We've exchanged movies and she and Justin played air hockey together.  She and her mom have to make this 2 hour trip every couple of months for labs and check ups.  She misses her friends at school and her family, and she told me, "I'm not really the playin' type.  It's hard for me to breathe and stuff.  But I love pickles!"  She told me lots of medical info and used terms that I was surprised to hear come out of a 4th grader's mouth.  She shouldn't be talking about bronchioscopes and lab work.  She's nine! 

You don't have to look far to find someone who has it worse. 

So tonight instead of dwelling on the fact that I know we're not getting out of here tomorrow either, I'm just going to be thankful that we're close.  That we're only waiting on drainage, not anything that's gone wrong with his heart.  I'm thankful this journey has been as "easy" as it has, and that we have our boy and get to see his smiles everyday.  And I hope I can remember not to be blinded by what I want, and what I'm ready for, and can keep open eyes and an open heart for all of these people around us who really do have it rough.  

As usual, one of the highlights of the day was the Atrium.  I'm honestly going to miss being in this playroom when we leave here.  I missed having someone to play babies and "kitchen" with today, but I did get to play pool with D.  I use the term "play pool" loosely.  I am certainly no pool player!  Thankfully Derrick doesn't want to play it the right way anyway.  He likes to sit in a chair at a corner pocket and block balls. 


He also enjoyed painting a fire truck and an airplane today.  His works of art are going to take days to dry because the paint is to thick but he loves it!


Have I ever told y'all how awesome and supportive our family is?  My brother and his crew came down again for another visit.  Visitors really break up the day and make go by much faster.   The real highlight of the day was seeing them.  We just hung out in the room and chatted, but it was fun to hear about life outside in the "real world."  You kind of forget that life is still going on out there when you're stuck in here!

Derrick and Zac enjoyed playing games on the Kindle.  It was fun to see him laugh and be silly.  So normal.  :)
Thank you for praying for him.  And for us.  Your continued love and support has carried us through a whole lot.  Please continue to pray that this drainage stops.  And if you have an extra minute, please say a little prayer for all of these kids and their families who are stuck here for far worse reasons than we are.  I'm sure they'd appreciate it too.

:)


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10.12.2013

Post Fontan :: Day 11 :: Rumor Has It

This is really kind of crazy, but today a rumor started here on 8D that little Derrick Carter may be on the way out of here!!

This morning during rounds they told us his chest tube drainage had gone down from 80ml per side to 40!  How much he's allowed to drain before pulling the tubes is based on body weight, and Derrick's goal is 25-30ml in 24 hours.  The surgeon on call isn't D's surgeon and the nurse said he was a little more conservative, so we'll see what happens tomorrow.  As of right now he's not draining much at all!  So....discharge should be Monday, but possibly even tomorrow!!

What?!?!

It was just a day or two ago that they were saying, "It will be a while," and now it could be tomorrow!  We're elated but trying not to get excited about leaving tomorrow.  It's really more likely to be Monday but I'll tell you it's just nice having an idea of when we'll be able to go home.  Monday is perfectly fine with us!

Derrick has had a great day.  Mr Luke and Ms Laura came to visit this morning.  They were a lot of fun to hang out with.  Mr Luke and Derrick had fun playing with his new remote control car.

A remote control car is a great toy for a kid who can't run around.  However, for a kid who doesn't quite have the concept of driving and who tries to drive it from the bed when he can't see the car...in a room full of cords....it's a lot of work!  He loves it though, so rescuing the car over and over and over and over, is what we've been doing.  He stood up for about 45 minutes today playing with the car, and he sat on the couch for another hour.   He's been up a lot and acts like he's feeling good.  Still only Tylenol for pain and no mega tantrums like we had a few days ago.  We like it! :)

Mamaw and Papaw came to visit today too.  They brought D some very low fat spaghetti.  He and JK loved it!  He ate it again for dinner tonight.  While they were here Justin and I got to go on a lunch date, which we thoroughly enjoyed, and they took the kids to the Atrium to play.  They had a great time and when they came back in the room D crashed!  He was pooped!  He slept for a good hour or so and thankfully woke up still in a good mood.

Since the rumor of us leaving was circulating, JK went home with Justin's parents.  She happily walked out with them as she chatted about being excited about petting Rufus, their dog.  I think she's had her fill of being here, and since she was happy to go we were happy for her to go.  I went to clean up the house we've been staying in and I'm back with the boys at the hospital tonight. 

We're snuggling in, hoping it's our last night here.  We love this place, really, we do.  But tomorrow will be 13 whole days here, and that's plenty for us! :)  We'll gladly come back to visit but we're ready to be HOME!

Thank you so much for your prayers for our boy!  I am certain they are why he's done so well and why the drainage has slowed as quickly as it has.  The staff has been amazed at the drastic difference...nothing short of a miracle!

Please continue to pray for this drainage.  We appreciate it so much!  :) 




10.11.2013

Post Fontan :: Day 10 :: Better!

Ahhh....today was a better day!  It didn't start out with a great attitude from the boy, but it ended much better.  Justin decided this morning that we were going to stop the hefty pain med and see if that helped with Derrick's attitude.  Today he's been on all of his heart meds and tylenol for pain.  Guess what?  He was a lot less of a grump!  

We're thinking that while he had a lot of pain the Oxy was very helpful, but his level of pain has dropped a good bit and it seemed like the med was doing more harm than good.  While it was killing pain it didn't bother him a whole lot, but since it didn't have as much pain to kill anymore it was making him feel kind of crappy.  He's been a different kid today.  He may get the good stuff tonight to help him sleep, but until he tells us he needs it, it's gone.  

He got the central line that was in his neck pulled today.  That means no more iv anything!  All he has left now are the 2 chest tubes.  We're cleaning him up!  The lack of iv also means his drainage is down enough to stop the Albumin, which of course is a good thing.  The drainage is still decreasing so we're happy about that.  At this point he's draining about 80ml out of each tube and they won't pull them until he's 30 or less out of each one.  Of course they don't want to get our hopes up and give us any sort of discharge date, but the nurse practitioner said today that based on his trend in decreasing we're looking at maybe Tuesday or Wednesday.  Maybe!  That gives us a little hope! :)  The outpatient pharmacy brought over going home meds which means discharge is near.  That part kind of confused us, but whatever.  It means home is at least in the foreseeable future!

In other news....

We got to play with Gams again this morning.  :)  This was the best I could get with the two of them.  They're not very cooperative for pics these days. 

They were so funny in the elevator.  It was such a long ride they had to take a break.

We took them outside to run around and burn off some energy.  I think Ashley and I are the ones who got a workout.  They ran, but ran out of control.  Not exactly what I had in mind when I thought it was a good idea to take them outside.  It was a beautiful day and they had fun running wild.  I'm pretty sure people were watching us like we had no control of our kids...and they were a little bit right.  But there's only so much you can do with a kid who's been cooped up in a hospital room and her little friend who follows suit. 

We took the girls to the Atrium to play. Derrick wasn't interested in making the trip this morning but the girls had a blast! Jk was playing patient, which totally broke the rules and I forgot until she got up.  Oops. It was cute though.

This afternoon we played in the room.  We had a lot of fun with this crayola projector that d's friend Braeden gave him. 

Another therapy dog, Lucky, came by.  Sadly, D was sleeping and jk had wet nails from a fresh paint job and couldn't pet him. She was pretty upset!  Lucky was too cute in his stroller.

Once Derrick woke up we got special permission to be off the monitors and take him outside for some fresh air! It's been 11 days since he's been outside! He was in desperate need of some vitamin D!  There were lots of balloons around, which jk loved.

D acted like he didn't want to go out, but once he did he enjoyed the fresh air.

We just strolled around the horseshoe. 

On the way back upstairs we made a pit stop. Fat free Fro-Yo!

Chocolate with sprinkles is a yummy combo. :). I see many visits to Freshens in our near future.

Before calling it a day we squeezed in a trip to the Atrium.  The craft for today was sparkly ghosts.  

We had fun. :)

And we discovered jk's love for glitter, which doesn't surprise me at all!

It was so nice to see Derrick enjoy himself again. He wasn't without his whiney fits, but I'll take days like this over the past two days anytime!  Jk has gotten pretty comfortable with the hospital. So comfortable it makes me a little sad, but I'm thankful she can be here.  

We're off to get some zzz's.  Thank you for your continued prayers!!  

Our specific requests are pretty much the same:

That the drainage stops soon.
That d's personality continues to come back.
That we can remain patient as we wait. And wait. And wait.
That we can give d some good, nutritional foods while keeping him fat free.
That he starts gaining weight, or at the very least doesn't lose anymore.

Thank you, friends!


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