Thankful Prayers and redirection of prayers

Thanks for the continued prayers, Colt is continuing to do great, his oxygen is staying in the 80 - 83 range which is so great before surgery his ranges were 72-74, his feet and hands feel warmer instead of ice cold. What a difference, other than still walking like a little hunched over man he is doing amazing, Bradley and I are working with him daily to get his back straightened out, the nurse said it was normal for them to overcompensate and hunch over to avoid pain where the muscles have been stretched, just have to make sure we follow all the restrictions and not let him lift or pull anything, etc. He has been so glad to be home and loving the extra attention from us and getting a little more than normal video game time. His attitude is slowing coming back, but he still seems a little calmer, hoping that having the extra oxygen is helping.

In addition to an update on Colt my main focus was to ask for the redirection of prayers to my brother Shane, we just found out yesterday that he will be going in for Open Heart Surgery on Monday due to an undiagnosed Congenitial Heart Defect, he had been sick off and on since April with what was thought to be just a really really bad sinus infection, pneumonia, and then finally diagnosis of double pneumonia due to a bacterial infection, this infection had setup vegetation around some of the valves in his heart and through a heart cath the heart defect was diagnosed because of where the vegation was spreading, he only had 2 valves in his aorta instead of 3. That is a mouth full and I probably did not get it all right, but please say some extra prayers for Shane, as Colt says "Uncle Shane is the best, I had the best day ever on the boat and jet ski with him and Aunt Terecia"

That is right Uncle Shane is the best I look to him for advice and guidance, he is my light, he always looks for the positive in every situation, he is humble, he is strong, he is courageous. I am blessed to call him my brother not only by blood but also a brother in Christ.


Thanks in advance for uplifting prayers for him!
In God's Love & Amazing Grace,
Miss

Home.... The place where we belong

After much debate, consultations, and several tests and an echo, met with Dietician due get the details on his dietary restrictions, we were cleared to come home.... Those words have never sounded so sweet.

 Colt was still a little sick and nauseated so there was a little hesitation, but everyone of his tests came back okay so it could still be the pain meds that were still in his system.


Colt with Dr. Keller Pediatric Cardiologist

We had to stop a few times for Colt feeling sick so we stopped and got tums and a 7 up  and then to pee due to the Lasix and finally after 15 minutes and not getting very far,  I got in the back seat and held him all the way home and it seemed to help, the car ride was not the best, but the destination was so worth it.

We go see Dr. Cottrill next Wednesday Sept. 2 so we are hoping he will get to have visitors after that.
He is just about back to himself except when he walks he walks hunched over like a little old man, the muscles in his chest are tight, so we will be working on that this weeks and hopefully his back and side pain will lessen.

Thanks for all the love prayers and support, Colt was so happy to be home he came home to a lot of hearts going up and down the steps and filling his room, he really felt the love and welcome home.

 


In God's Love and Amazing Grace,
Miss

Ups and downs

After eating so well for supper last night, good things sometimes have to come to an end, they tried giving a softener again last night, first time he tried to swallow the pill Saturday night but couldn't and he bite into it and threw up apparently it tastes awful, last night they grinded it up and put in an oral syringe with slushy, did not work, it did not soften anything only induce vomiting. Then one of his IV lines were no longer working and they had to replace it.

 So thankful after rounds today they decided not to make  him take the pill anymore and switch to miralax and decided the drainage tube was enough under the boarder line and had slowed down enough to be removed. After that we thought the day was looking bright, they gave him some liquid pain medicine about 30 minutes before taking the tube out and put some topical numbing Medicine on it. They removed the  tube and All was great until about 9:41 am as I was trying to feed him some pancakes he got really sick and threw up, afterwards he said he felt better so we thought maybe it was the oxy that made him sick.  He was able to eat about 6 bites afterward and keep it down, then lunch came and he tried to eat and he said he felt like he was going to throw up again, I  had him try saltines and he ate about 3 and so far so good and he was able to drink some ice water then some Diet Coke.  So we are going to see how supper goes, our nurse has let the doctor knows so they can discuss.

He slept really good last night, walked twice as far today and we are going to try to walk some more later his balance is still off, he loved sitting in the shower longer today without the chest tube and getting on new PJs. Overall the good still outweighed the bad.  Still not sure when we will get to come home.  

Dr. Keller the cardiologist and the team of doctors said that when we are discharged to go home that they want him quarantined for at least a week meaning no visitors during that time and he can't leave the house.  Then after that time period when he can have visitors, no one can visit that has had a runny nose, fever, vomiting, Cold or flu symptoms etc. within the last 7 days.

His immune system will always be considered suppressed because during his first heart surgery they had to remove his Thymus Gland but his immune system is especially low now since he underwent major surgery. 

Bradley and I told our immediate families earlier which was hard, but we know that if they love Colt and respect us they will completely understand. We are the best advocates for Colt and we want to follow the doctors advice.  To our wonderful friends, I truly hope everyone understands, Bradley and I do not want to to have to come back here anytime soon once we get home.

God continues to bless us and keep Colt safe! I will continue to post updates.


In God's Love and Amazing Grace,
Miss

Getting better

Chest X-ray looks good today still to much drainage to remove the last drainage tube, they will re-evaluate tomorrow, he ate pretty good for breakfast and for dinner and he fed himself dinner, not so much for lunch,  with some help Colt was able to go to the bathroom today and that really helped his belly pain. He walked about 150 feet today,  after we covered the lines and chest tubes he was able to take a shower and I was able wash his hair and body and he got on new PJs boy oh boy it felt nice to do something normal.

Had some issues with the dietary menu it was supposed to be on a low fat diet from day 1, but someone failed to put the dietary restriction in the system and they finally caught the error today. He has been much more alert and a little more like himself , he has had the cries a few times today, but the videos and pictures have really lifted his spirits, Bradley and I told him that sometimes you get the "Can't help its" and it is okay, it will get better. It is going to take time to get back to the activity level he was but we are improving and taking it one day at a time.  He will out of the blue say I love you mommy and say mommy can you give me some hugs and kisses.  I say I love you too and of course I will give lots of hugs and kisses. Those words are so treasured and precious to me.  This morning he wanted Daddy to lay in his bed with him and rub on his back.  He has us both wrapped around his little finger.

In God's Love and Amazing Grace,
Miss

Today was a big day!

Well, today was a big day!! And goodness, do we serve a BIG GOD!!!

Yesterday, they removed 2 Chest Drain Tubes!!!!! YAY!! There is only one more left! And depending if drainage slows down, the last drain tube might be removed tomorrow! They removed the pace wires today!! YAY!!!! 

And drum roll please!!! 

COLT GOT MOVED OUT OF PICU TO THE RECOVERY FLOOR!!!!! 

(Colt being transported from PICU to recovery floor) 

PRAISE JESUS!!! YAY!!!!!!! 

Colt is so so excited to have his own room with a private bathroom, and a door! In the PICU it was all open with only curtains for privacy, Colt wasn't a fan of that! Along, with the private room also came a couch and recliner for Missy and Bradley to sleep in! Colt has been up more and sitting up in the recliner in his room!! 

Colt has been eating more today as well! Let me give you an example, for breakfast: few bites of eggs, 2 pieces of bacon, half a sausage patty, and 1/2 of a pancake!! That's a ton of food for Colt!! Yay!!! 

And to top off this amazing day.......

COLT GOT UP AND WALKED ABOUT 100 FEET!!!!!! SUPER YAY!!! 

 

When I got the video of him walking I had to stop myself from breaking out into blubbering tear ann I'm so incredibly proud of how hard Colt has been working to improve and how much he has improved! He has had set backs, but he has also prevailed and worked hard!! 

(Walking today wore him out so after walking about 100ft, Colt was tired and needed his daddy to carry him.)

Colt's still got a way to go so, please keep those prayers coming! But God is so good!! 

This evening Colt was getting really homesick so he watched the rest of his videos that everyone has sent and he has absolutely loved them all! They brighten his days and put such a smile on his face!! I can't thank you all enough for those videos!! 

We love each and everyone of you and thank you for sticking with us on this journey! God is good, Colt is doing good! 

All Glory to God!

Lindsey

Pictures, Praise, & Love

I figured pictures speak louder than words, we have had a few set backs last night and today but continue to be moving in the right directions, hopefully tomorrow we will be able to actually get him up and walk around.  He has got out of the bed twice today with help. Praise God for them having a PS3, he plays really well for about 10 minutes and then he is wore out.

Special thanks to all the wonderful people who filled out hearts and made videos when he was awake he started watching some videos, each one put a special smile on his face, he was feeling the love. We truly appreciate everyone wanting to come visit Colt, but with all the chaos here we are holding off on visitors until after we get home and get settled.  It is a Mad House here in the ICU and in Bradley's words the traffic and construction here in Louisville is He!! On Earth.

I promise to keep updating the blog at least once a day, replying to texts and emails. Bradley and I have not left his side, we have always made sure one of us as always been with him at all time to help keep his calm.

Got his Central Line, AV Line and 2 of the 3 chest tubes out

Praise be to God and praise those that God put in our lives that have prayed over Colt. God Bless You.

Completely exhausted



Thanks to our parents, and family, and special thanks to Lindsey for help making Bradley and I 16th anniversary today great she treated us to dinner from somewhere other than McDonald's (you can only eat so much McDonald's before you get really sick of it) the peach roses( which are my favorite), for being so selfless and sharing Colt's story.

In God's Love and Amazing Grace,
Miss

Baby Steps

Colt continues to slowly get better, zofran and decodron still had not helped, I asked for phenegran, they don't like to give phenegran anymore in kids due to the side effects, but the mom in me could handle him continue seeing him suffer and puritan has always helped better than Zofran for him in the past

Not sure if it was the phenegran or him getting to sleep in my arms for 3 hours but he has finally stopped throwing up for the time being, he got his catheter removed, but went back on oxygen for right now because he is finally resting more peaceful,  they switched his pain meds to liquid,  I finally left the Peds ICU for the 1st time to get some McD's SWEET TEA for my boy I came back and said I got you some sweet tea his eyes lit up with excitement for a moment and he got a few sips down, and then started saying he was ready to go home after finally calming him down and telling him we could not leave yet we soothed him back to sleep for a little bit.

Colt is my absolution, there is a God and he is so great!

Thanks for the continued prayers and love, we are so truly blessed.

Look at the amazing power of prayers at work.

In God's Love & Amazing Grace,
Miss

The first night

Well, it has been a rough night Colt was waking up about every 30 minutes last night wanting anything from a Baja Blast, lemonade, a steam bath, to now really wanting some sweet tea, even though he has only been awake for about a minute or two at a time he has made those moments count and kept Bradley and the nurse busy all night, I slept for a few hours or I think I did or at least tried to, most things are a blur night now, I took back over staying with him around  4 am this morning so Bradley could try to get some rest, we are taking shifts staying with him trying to keep him calm, when he comes to he has been really convincing wanting some sweet tea, but he has not been able to keep the water and small amount of sprite  down yet so sweet tea not loo
king possible today yet, we had let him drink a few sips from a straw but no luck it is still now staying down so we are swabbing his throat for now.  He is so strong and have have been truly blessed to have Amanda, she is the best nurse so caring and compassionate.  I will trying to keep updating as he is improves.  Thanks for all the prayers, keep them coming. Colt is our special little superhero.  God is alive and working miracles.

In God's love and Amazing Grace,

Miss

Doesn't everyday begin at 3:30 am?

And then it was 3:30 am.

While I was trying to grab any ounce of peace I could find, and attempting to accomplish at least an hour of sleep before it was time to begin our surgery morning routine, Colt woke up.

He began with complaints of his legs cramping(Dang you growing pains!!!), what is a Momma to do, I tried snuggling, rubbing and massaging his legs, nothing was really helping. Then, it was time for Daddy to step in. I attempted to get Colt to lay in the bed with Bradley, and then I could sneak off to the couch and attempt that "at least one hour of sleep"(yeah, right! haha). Colt was persistant and wide awake!! I suggested that we get our bathing suits on and have a hot bath, heat seems to really help when Colt has growing pains. 

At 3:30 in the morning, while in you're in your swimsuit with your little boy in the bathtub, it creates some raw conversations. For instance, the conversation between me and Colt this morning.......

Colt: I don't want to have my surgery....

Colt: Let's just stay at the hotel and swim and play video games.

Goodness, does this boy love his video games and swimming!!!!

My heart grew heavier and heavier as time got closer to 5:00 am.

Pray. Pray. Pray. Pray. Pray.

Trust. Trust. Trust. Trust. Trust.

Peace. I need peace, I need to find my peace from God!!! I know it's there, I just need to find it!!

But, finding my peace this morning is like finding Waldo in one of those books. Very difficult.

But, I know it's here, I know God is here, I know without a doubt that God is here and will never leave. 

After the warm bath and hot compresses on Colt's leg, it was time for another anti-microbial bath to prepare for surgery. Then, I was able to get him situated with watching Netflix. By this time,I have forgotten about finding that one hour of sleep. 

It's time to begin the day. 

Colt with "Chilly Willy" and "Wango"(Wango has been through diagnosis, birth, 1st surgery, 2nd surgery and now 3rd surgery.)

The day of surgery. 

It is here.

5:45 am

We arrived at the hospital, and we got pulled to our Pre-Op room to get prepped. Bradley's parents, my parents, and little sister got here around that time as well. By this time, Colt was content. He has an iPad, a pretty nurse and was getting lots of attention. Colt was doing just fine!

Grandparents got to get some lovins' in, Linds got to get some lovins' in. While my parents and little sister were back with Colt and us before surgery, I asked for my dad to pray over Colt. Dad, got about 2 words in and then the tears began. So, Linds picked up and began praying. During the prayer, Colt began to cry and say he didn't want to have his surgery. I think him seeing Papaw Phil cry and then all of us cry over him, kinda scared him. We quickly finished up the prayer and then Colt's tears stopped and his next comment.....

"Hey, Linds, you know what we can do...they have Wifi here, connect to my Minecraft world."

Of course, tears dry up, let's play Minecraft. Colt, is certainly one of a kind.

Then, it was time to start the medicine. They gave Colt some Verset, which is supposed to calm and relax. But in this case, it did not. Not one little bit. It made Colt irritable, which was quite comical.

By this time, the grandparents and Linds were back in the waiting room. Bradley and I were beside Colt and noticing how he was getting agitated. I couldn't help but laugh at Colt with how the medicine was making me laugh and I told him that he was acting just like his daddy! Col't reply....

"If you don't quick laughing at me, I'm going to smack you!"

Well how do you stop laughing after that?! And Colt was right, I laughed and he smacked me! Right across my face and it hurt!! Boy, is he lucky he's cute!! 

Bradley responded with "Boy, I'd hate to have to whip your butt in the pre-op room!"

Colt, settled down to watching "Woody the Woodpecker Show" (It's his peaceful show that he watched to calm down.) And it was time.

Can your heart get any heavier?!

We returned to the waiting room, to well, wait. Wait, for updates, wait for peace, wait for the surgery to be over and to love on Colt.

But, while we wait, we wait with family, we wait while covered in prayers, we wait knowing that God is here with us and keeping us. 

And for that, All glory and praise be to God. 

Try this again

So as many of you know last Monday we set off for Louisville only to get only 20 miles from the exit and receive the phone call that Colt's surgery had to be rescheduled due to an in patient needing surgery. So for the next hour as we drove back home we sent texts, made phone calls to our parents to reschedule their hotel and let friends and family know so they did not show up to Louisville and find us no where to be found, and luckily was able to get our hotel stay rescheduled for this week without being charged. 

It was at this point I realized that I was at the acceptance phase that Colt really was going to have another open heart surgery, I had been in denial up to this point.  We debated about going ahead and letting Colt start school, but after a long discussion we decided we did not want risk Colt getting sick and getting postponed once more, se we have had him under quarantine lately, he doesn't mind he is going through the homebody phase. 

And now it starts again my heart is heavy again once more and the situation is out of my hands we will attempt to leave again tonight for Louisville. Bradley has been my rock, I know it is taking his toll on him to, but he never shows any signs of weakness.  How amazing is my husband, guess he doesn't have a choice since there is only room for one crazy person in our family of three at one time..lol


 I know God has this and he will continue to carry Colt through this.

Crab Legs, MJ, Red Lobsters, and the kindess of strangers

Story courtesy of Colt's Aunt Lindz

lindseyhannahI have to share this story. Today (Saturday August 8), Missy, Colt, Mom and I made a trip to Hamburg in Lexington, KY. And we asked Colt where he wanted to eat, he excitedly exclaimed, "RED LOBSTER!! I WANT CRAB LEGS!!" So off to Red Lobster we went. As we were seated our amazing waitress came up(she's in the photo with Colt) Colt told her that he had Hypoplastic Left Heart Syndrome, she knelt down to his level and asked if her could explain that to her. And he explained how the left side of his heart did not develop but his right side is okay. That he is going to Louisville to have his 3rd open heart surgery. And so on. My heart crumbled!
We ordered and Colt got a massive plate of crab legs! Are just about all of them! Then our waitress came back and asked if he wanted a dessert, the Red Lobster team wanted to do something for Colt, his reply "I'm full of crab, no." Haha! Then the manager came by and talked with Colt, then we asked our waitress if she wanted to fill out a heart for Colt's recovery room. And she did, in fact the whole staff did. And each delivered it to Colt with a message of encouragement, a high five, or a fist bump. Then the manager took care of our bill. To say the least our table was covered with tears.

To make this better, there was an older couple sitting beside us who had over heard the entire thing, the woman, got up and gave Colt $30 to by himself a toy to play with after surgery and the man asked to pray with Colt. Colt put his hand out and this man prayed a beautiful prayer over Colt. We were all in tears.
God is good and God is there to give us reminders of love and goodness when our hearts so desperately need them. Right before all of this happened, we were having a conversation about our fears and anxieties going into Wednesday. And do you know what God did after hearing that? HE SHOWED UP AND SHOWED OUT! He worked through the entire staff of Red Lobster in Hamburg to cover Colt, Miss, Mom and I in love!! Words cannot express the amount of gratitude our family has for the people God has put into our path today! But Thank you! Colt has already stated that as soon as he gets better, his first order of business is to go back and get some more crab legs.

I could not have told it better myself.... I am humbled at how others care and I hope that I can show the same kindness to other.. what an amazing and uplifting day.