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!