Another day at the Hospital

Today was another long day. Gavin had to be NPO for a couple of hours. He went in for a CT scan with contrast.

 

They interrogatted his pacemaker to make his heart rate faster then slower. They drew some labs then started the contrast. Gavin was brave as usual. He actually enjoys the warm sensation (because of his circulation he is always cold!).  

Next up was femoral ultrasounds. They checked all his veins in his legs to rule out any blood clots. Gavin is prone to blood clots, which is why he is on Coumadin. 

Lastly, Gavin had a chest X-ray then we got to tour the ICU and stepdown floor. 

He did a great job today, laid still, didn't flinch when getting blood drawn, just doing his usual courageous stuff! 

Our plan is to come home tonight. With that being said, we ask that no visitors come over this weekend. As much as we would LOVE to see you all and let you give Gavin a hug, we just need to keep him well. His health right now is FIRST priority for us. There is so much sickness going around and we don't want to delay this surgery anymore. Hence the pic of the mask gang today, they did a good job of keeping away the germs! 

We will come back to KC on Sunday and gear up for more pre-op Monday and surgery Tuesday! 

I wanted to end with a song that was playing while we were getting ready this morning. Gavin and I started singing along. Fear you've got nothing on us. Gods got this! 

You paralyze me
You shut my eyes
When I'm trying to find some hope
You are a prison
You're on a mission
To keep me from where I should go
Oh, I've had enough of your scheming
I'll be leaving
Oh, I hope you know your end is near
O, fear, you'll never keep me here
I hear freedom calling
I feel my chest falling
I see Jesus coming
You'll never keep me here
I know my God is near
I know my God is near
You were the lock
And you tried to stop me
But now I hold the key
The door is open
And I'm finally breathing
I'll be leaving
Oh, you held me for so many years
O, fear, you'll never keep me here
I hear freedom calling
I feel my chest falling
I see Jesus coming
You'll never keep me here
I know my God is near
I know my God is near
These are the moments
I feel courageous
God is with me
I can face this
These are the moments
I feel courageous
God is with me
I can face this
I hear freedom calling
I feel my chest falling
I see Jesus coming
You'll never keep me here
I know my God is near
I know my God is near
O, fear, my God is near

-Moriah Peters "Oh fear, my God is near"

Surgery Update

Today was a long day! Gavin had an echo, EKG and pre-admission testing. Tomorrow, Gavin will have a CT scan, chest X-ray and femoral ultrasounds. We will tour the hospital and get familiar with our surroundings. Monday we will go in for lab work and another possible stress test. We check in Tuesday (1/5) morning for surgery. We're feeling good about how everything has worked out, with another holiday week, it will be much better to do this next week when all the best personnel is on staff. Thank you all for the continued prayers. Gavin is in good spirits as usual. If only we could all be as joyful as him. He makes me strive to be a better person everyday.

 

Up in the Air

Well surgery will not be tomorrow, not certain it will even be this week. Our surgeon really wants to try the hybrid (open chest opposed to open heart). He did not know that there were no mesh coils available (to close off the area). Due to the weather and short holiday week, the coils may not be here in time to do surgery this week. So the plan is to shoot for early next week. Gavin will go in tomorrow for pre-op. We're still trying to weigh the options and make a decision on if we will come home or stay until surgery. Typical us, always twist and turns involved. Feeling discouraged because we want to get this behind us. Feeling hopeful because we know the surgeon is going to try everything to NOT make this an open heart procedure. They really do not want to have to stop Gavins heart. Gavins already been through this 4 times. This entire situation is just complicated and very risky. We don't want to jump the gun and want to take time to get the best case scenario for Gavin. Please continue to pray, we really need patience and peace right now. 

Lets go Royals!

We arrived safely in KC. It was a crazy drive, highway closed shortly after we passed through. Our families had to take alternate routes. But everyone has made it now!

Gavin is doing great, we plan to rest tonight and tomorrow, enjoy the snow that's coming here! We do not have definite surgery date yet. We're hoping for Tuesday. We will know more tomorrow. I will keep everyone posted! Thank you for the continued prayers! 

12-23 Update

Today has been a whirlwind... Gavin was extubated around 1 today.

It was a complete success!!! Gavin slept off and on and then developed a SEVERE itch. He itched so bad his face, neck, legs, etc were covered in red welps. They gave him doses of Benadryl through his iv and it knocked him completely out. Then we think he had some sort of reaction to the Benadryl, he was acting very bizarre. He slept off the last dose and woke up around 10pm feeling MUCH better! He is currently sitting up watching basketball and drinking chicken broth, his first meal. Our cardiologist told us he wanted to work super hard to get us home tomorrow night for Christmas Eve. So he kindly put orders in for Gavin to move out of ICU a night earlier and in to step down. So about 6 tonight we got moved to step down!!! A wonderful Christmas present! So please pray for Gavin to have an AWESOME night so we can get home just in time for Santa Claus!!! Gavin will be home bound this weekend and we will get a phone call from the surgeon to make a definite plan. Hopefully surgery will be Monday or Tuesday. 

Today we had some visitors... Some sweet friends brought us a YUMMY lunch, thank you Doyle's and Weedens!! We love you guys so much!!! One of my child hood friends Lydia and her husband Mitch came by to give Gavin a VERY special gift. Mitch works for the OKC Dodgers, once he heard about Gavins baseball analogy, he wanted to deliver Gavin a gift.

 

(I got to lay against Gavins bed and take a nap with him. Daddy got some cuddles in too.)

His very own personalized OKC dodger jersey and hat!! Gavin was still on the vent when Lydia came back to give to him. Gavin opened his eyes when she showed him and he got a huge smile followed by tears of excitement. It was a very touching and special moment! Thank you Stubenhofers!!! 

After Gavin was extubated, Gavins best friend and brother got to make a special appreance in the ICU. It was a sweet moment to see brothers interact. Adam and I got to take Brody to the play area for a little bit and enjoy a game of tag with him! 

Grandpa, Brody and Papa during an intense game of minion trouble in the ICU waiting room. 

Tonight the sweet Lawrences came up and brought us dinner. Delicious pizza, salad, cookies and brownies! Of course Brody was absolutely thrilled, he got to hug his BEST buddy Lincoln! These two are a hoot. They even have their own special language. Thank you Lawrences for your incredible friendship. You all have been through this journey with us since day one. We're forever grateful for your love and support! 

Kiki and bubba came up and brought the boys KC royals hats for our next journey. Not the best pic but this is when Gavin was having his itching episode. His pore face was beat red! Thank you Kiki and Bubba for the sweet gift!

So continue to join us in prayer about going home tomorrow. We've been under the impression we would be here for Christmas. To get the news today that there is a chance we get to go home tomorrow was music to our ears!!! Thank you again to everyone texting, calling, messaging us. We love you all!!!

Gavin! Gavin! Gavin!

I have so many alerts on my phone I don't know where to start. Thank you all for reaching out to us and praying for our boy. One day I will get through each of your encouraging words!

Currently this is my view. 

My sweet boy is in a "coma", getting the rest his body needs. It's been a tough day for him. He's been worked over hard. The main reason he is ventilated and sedated right now is to get his neck swelling down. He formed a hematoma after loosing some blood after the line was pulled out. His neck is pretty swollen but I think it's looking better. He was very pale and clammy when we first saw him in the ICU. I am happy to report his color is much better now! 

He started moving a lot earlier, so they gave him more sedation so he would not pull out any tubes. During this process I leaned up against him and said I love you buddy. He mouthed back through the vent "I love you." Precious, precious boy!

Specific prayers: that Gavin continues to get rest. That his neck swelling decreases and that he can be extubated in the morning. If all of this happens we will get to move out of ICU and into step down. If he continues to do well we will hopefully be home Christmas Eve or day to enjoy at home!! We will talk more with our surgeon this weekend. Gavin definitely needs open heart surgery. They tried so, so hard today to make the cath work. And we're so thankful for the teams incredible effort. We know Gavins surgery will take place in KC, and hopefully we will have a date set this weekend! 

About my post title... Gavin was fist pumping and chanting "Gavin, Gavin, Gavin" down the hall this morning and into the cath lab with his nurses and family chanting a long. So again tonight we're all chanting "Gavin, Gavin, Gavin!" You got this buddy. Gods got this! You keep fighting, keep throwing your stone. We're so proud of you!

Post Cath Update

Kristen here... We were just informed that the cath did not go as planned. The hybrid cath is now not an option. Gavin will most likely have open heart surgery on Monday in Kansas City. They are putting him in ICU because of a hematoma in his neck and keeping him intubated over night. Please pray he has a restful night and will be able to be extubated tomorrow.

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7 NIV

1:38 pm Update

We're a little past the 5 hour mark. We just received a phone call that they were still working on Gavin. We do know they've gained access in the neck, we just don't know how far they've been able to get through. They said they will call us again in an hour. Please, please pray that they're having complete success and we don't have to move to step 2. 

11:21 am Update

We've had our 4th update now. The latest update is that they've gained access through his groin for a central line. They're currently trying to access through his neck to get to the area needed. Keep praying! 

Go Team Gavin!

A Christmas Miracle

Well where do I even begin?! Yesterday I decided to send a text to a few ladies I consider "mentors" to me. I asked them to please join me in prayer and confession that we would get THE phone call today with THE plan for Gavin. I started to get concerned since the last I heard from a doctor was Friday. We had made some medicine changes and were told a plan was in the works and we would know soon. I guess my biggest fear is that the doctors didn't have confidence in how to proceed with Gavins current heart situation. 

I text these ladies and prayed all day I would get a phone call. Well 6pm rolls around and I had lost hope. About 6:30 I hear my phone ding. I go to look at it and it's our surgeon!!! Thank you God for answering our prayers!! He informed me that a definitive plan was set in place and our cardiologist would call tomorrow. He reassured us and checked on Gavin. So I felt a huge sense of relief after knowing I would definitely get a phone call and a PLAN tomorrow!! 

Adam calls me a little later, once he landed in Denver. When we were on the phone he said "hold on, an unknown number is beeping in, want to make sure it's not my flight getting delayed." So he clicks over and takes a while to click back to me. Once he does he says "hey I have Dr. O on the other end and he wants to conference with us." We had a 40 minute discussion on 3 different ways to approach Gavins heart situation. Here they are, I will try my best to explain in non-crazy medical talk. 😉 

1. Heart cath with the intention of going through the groin and gaining access to the fistula by burning or using a needle to pass through. This will be the most risky and time consuming part. Once that is done successfully they'll be able to get to the area needed to close off blood flow to the small part of his left ventricle that is there. If for any reason this process takes longer than they want they will move to step 2. 

2. Hybrid procedure: part heart cath part open heart surgery. The surgeon will come into the cath lab. They will roll Gavin to his side and gain access through an incision made in his chest. This would not require heart/lung bypass machine. Obviously this would be a longer recovery for Gavin. 

3. Open heart surgery with the heart/lung bypass machine. This is the least favorable option. Both the OKC and Gavins surgeon who is in KC now want to avoid this option if at all possible. If it came to this and Gavin was stable, we would transfer to KC to have this done by Gavins surgeon.

The reason this took so long to get a definitive plan is because our amazing team of doctors were being extremely thorough. Talking to top doctors across the country and getting their opinions. Basically were on an even playing field whether we go to OKC or KC. No one including the doctors they spoke with have experience with Gavins current situation. It is so rare that most surgeons won't see this in their career. There was one other case at a CA hospital that was similar but not identical to Gavins. That child's procedure was successful and they're currently doing well! We're believing and confessing this for Gavin!

After MUCH consideration, prayer, multiple conference calls with doctors, talking with our family and most importantly Gavin, we have made a decision. We will do this in OKC next week (looking at Tuesday-tentatively). Adam made Gavin a kid friendly graph. Drawing out what was going to take place. He put OKC on one side and KC on the other. Gavin of course uses his baseball analogy and says "ok so basically this is Dodgers vs. Royals." 😊 I just love this kid and his way of thinking. His courage and bravery is so uplifting to me! He went with the Dodgers because he wanted to "wake up in a hospital he was familiar with and be with all his favorite nurses and Dr. O (whose done 99.9% of his heart caths). Now that Gavin is 9 we want him to be a part of the decision making. Especially knowing we're on an even playing field with both hospitals. We really can't go wrong either way. We want Gavin to feel comfortable and reassured with where we're at. 

I thank you all for the continued prayers for our family. Last night was a tearful, hard discussion with our incredible family. Can we just talk about how we have the best parents ever? We value their opinions so much. They've held us through this journey. We also have some pretty incredible sisters and brothers-in-law. Always willing to lend a hand (even from afar!) 

We can't wait for our Christmas miracle next week. And to come home and have the "BIGGEST, BESTEST party with his cousins, ever!" (According to Gavin). We're looking forward to that party too son! 

Pics from last week: 

"Party in a box" from our sweet church family. Gavin helps with the Rhodes Christmas party at our church each year. He was so sad to miss this year. So one of our sweet sisters brought the party to him! 

Our precious youth group bringing joy with Christmas carols, food and treats!

Gavin skyping his class and presenting his "book report in a bag" to them. 

We also received multiple acts of kindness last week. Grocery shopping by our awesome neighbor Shannon. Granny B staying with me while Adam was on his work trip. She also went out of her way to help however I needed! Our sweet friend Dawn, went on a search for Gavin some house shoes for the hospital. Our sweet friends and family who are willing and ready to lend their homes to anyone coming to OKC next week. Our incredible school LCS, literally the best staff and families on planet earth. I can't even tell you how amazing they've been to us! I am so sorry if I've left anyone out and I plan to personally thank each of you in someway. We're so blessed, so loved. 

Trusting in His word, feeling peace in His presence.... “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

John 16:33 NIV

Gavin the Courageous

Gavin hasn't been in school since the Thursday before his heart cath and Thanksgiving break. We've been doing home bound school and the first week was a success! We went up to school to take his tests during his teachers plan period. Gavin wore a mask and was not around any students. His sweet classmates wrote on the board adjectives to describe Gavin. My favorite was courageous. That he is!

Gavins ENTIRE third grade class wrote him letters of encouragement filled with bible verses and pictures.

Gavin also got to skype with his class last week. He really enjoyed seeing his friends and his sweet precious teacher Mrs. G. We're going to make this a weekly thing until Gavin gets back to school. 

One night last week Gavins school counselor, Miss. O and his 2nd grade teacher, Miss. T. came over to play games with Gavin. This made Gavin giggle and smile! 

We have been blessed my so many acts of kindness and generosity this past week... Church on the Move (the home

Church of the boys school) sent Gavin a huge basket of goodies! One of the staff has called us weekly to pray and give us words of encouragement. The parents of Gavins classmates have been absolutely incredible. We're so blessed to be a part of the LCS/COTM family!!! 

We've had multiple families offer us meals, Christmas shopping, etc. A very special family brought Gavin and Brody some early Christmas presents, lots of KD stuff that just made their day!! Thank you Hampton family!! One of my fellow heart mamas sent me this, it just brought me to tears!

The blessings continue... My grandmother graciously sat with Gavin yesterday so we could knock our Christmas shopping out! My parents kept Gavin over night one night so we could catch up on some sleep. Gavin has been very figity at night. He can't sleep and often has chest pains. My poor dad slept with him and realized how bad it's been for us at home. We can't thank them enough for giving us some sleep!!! Gavin is having good and bad days. This afternoon has been especially rough. He's cried most of it and he is currently sleeping on me as I type. 

We've been in communication with our surgeon and OKC. Here is the latest... The films from cath lab, echoes etc. are still being looked at and trying to confirm the best approach and place to do this. In the meantime we're adjusting more medicines to keep Gavin comfortable. We will definitely have more of a plan by the end of this week. 

A couple of sweet third grade mamas have been sending me bible verses about peace, healing, etc. This one has been one of Gavins favorites... Psalm 27:14 Wait on the Lord, be of good courage, and He shall strengthen your heart; wait, I say, on the Lord!