Monday, September 28, 2015
Tuesday Sept 22. was Back to School
Friday, September 11, 2015
Cardiology appointments and updates
Sorry, being home has been busier than ever.
Colt's cardiology appointment last week went great Dr. Cottrill said he still needed to continue the Lasix and stay on low fat diet until out next appointment next month with her. Colt got his stitches taken out and we can now have visitors, we are still trying to avoid places like Walmart and large crowds for another few days.
Colt started last Thursday with the homebound teacher, she will be coming on Tuesdays and Thursday. There is a lot of math for 2nd grade but we are really pushing him to get caught up on everything.
I am still so very Thankful for all the continued prayers and thankful for everyone who has visited. Colt was starting to get really tired of see only me and Bradley.
Please keep praying for my brother Shane he still has a very long road to recovery, but as he said he has his Angel taking care of him meaning his wife. (is that not the sweetest thing ever). We got to facetime Saturday and Colt and him showed each other their scars, it took everything for me not to cry.
Thank you God for these 2 amazing souls and thank you for helping mend their broken hearts.
Tuesday, September 1, 2015
Scar Brothers
Colt and I got to facetime my brother Shane Sunday evening and we told him we loved him and Colt said Uncle Shane we are going to be scar brothers, Shane laughed. That is so Colt, what a weirdo, but he is mine.
Friday, August 28, 2015
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
Wednesday, August 26, 2015
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
Monday, August 24, 2015
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.
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
Sunday, August 23, 2015
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.
In God's Love and Amazing Grace,
Miss
Saturday, August 22, 2015
Today was a big day!
Well, today was a big day!! And goodness, do we serve a BIG GOD!!!
Friday, August 21, 2015
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.
In God's Love and Amazing Grace,
Miss
Thursday, August 20, 2015
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
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
Wednesday, August 19, 2015
Doesn't everyday begin at 3:30 am?
And then it was 3:30 am.
"Hey, Linds, you know what we can do...they have Wifi here, connect to my Minecraft world."
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.
"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!!
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.
Monday, August 17, 2015
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.
Monday, August 10, 2015
Crab Legs, MJ, Red Lobsters, and the kindess of strangers
Story courtesy of Colt's Aunt Lindz
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.
Wednesday, June 10, 2015
Heart Cath
Well, I got the phone call yesterday that Colt has been scheduled for his pre-Fontan heart cath for Tuesday June 30, 2015. So this 3rd surgery is really happening soon. I know God has this, but I can't stop the hurt in my heart, I would take his place without hesitation. Colt is an amazing little boy and is spoiled rotten, he has really grown up this year hard to believe he will turn 7 next Wednesday.
I know exactly how God loves his children because that is the way I love my child. I know he needs this surgery because he has been slowing down and more tired.
His smile brightens my day and his hugs and kisses make all sadness melt away. He is so special to me. I am going to make a video of all our friends and family saying a special message to him, so he can see how much he is loved and prayed over. He is brave and courageous and I want to remind him of it, he wants to be Batman when he grows up so he can help people and put away bad guys, thats our boy.
Please keep Colt in your prayers.
In God 's Love & Amazing Grace,
Miss
Fontan Operation
Monday, January 26, 2015
It's been too long
Well, I can't believe it has been so long since I have published a post, times just goes by so fast.
Colt's heart cath back in September of 2012 went great and all the doctors and cardiologists discussed his case and none of them felt comfortable doing the 3rd surgery yet since Colt's heart is still functioning good and he is stable. There are some serious complication that can occur with the Fontan due to the fenestration that can lead to Plastic Bronchitis in which masses form on the lungs and the only cure is a Heart transplant, so as of right now we are taking it slow and still following up with his cardiologist every 6 months. Poor boy has been sick quite a bit, but that is in part due to his suppressed immune system. He had the stomach bug in October, the Flu @ Christmas for the 2nd time and just got over an ear infection.
Sorry I tried to upload some photos but it was taking forever, I will try to add them to the slid show
I got asked to speak at Colt's school Feb. 2, for the American Heart Association Jump Rope for Heart event and share Colt's story (Wish me luck, I don't do very well speaking in front of large groups) I start looking back at the pictures and all the feeling start coming back along with the tears and the needs to keep hugging and kissing Colt as much as possible, people who know our story have asked me, Missy how did you do it? I say, from the love and support from my husband Bradley and my family and friends, but most of all GOD, my feet never hit the ground he carried me through it all. The whole time even on the day in the NICU when Colt quit breathing, I had peace, I knew we were going to bring our baby home.
Look at him now, so rotten and yet so sweet. He has in 1st grade and goes to a great school, has a wonderful teacher, great staff and school nurse, and an amazing PE teacher who is a first responder, boy does that put my heart a ease.
Life is a miracle and God is good.
With Love and Amazing Grace,
Miss