Wednesday, September 7, 2016

Stress Test

Gavin had his stress test in OKC today. They called us this morning and asked if we could make it this afternoon, so we did! 

Gavin lasted TWELVE minutes without passing out. He did awesome!! He walked in and said he was feeling "confident." I just love his attitude!! There were no major changes on his EKG. However, everyone is still super cautious and on edge about Gavins heart. We don't know for certain if Gavin is having drops in blood pressure or episodic times where more blood is pooling into that ventricle with the coils. So we're all still scratching our heads on what is going on.

We discussed implanting a device in Gavins chest wall that would record what his heart is doing when he passes out. But we're leaning towards waiting on that, to see if he passes out again. There is also another device we're looking into purchasing that we can manually record an EKG if Gavin were to pass out. 

The Kansas City doctors looked at the films and seem to agree that the cath right after the coils were placed and the cath 2 weeks ago look similar. Yes there's still blood getting into the ventricle, but not 100% sure that's why he passed out. The echo looked worse but sometimes an echo can look worse but a cath looks the same. So we're going with the comparing of the two caths!

Everyone is agreeable that Gavin should still limit his daily activities. Only do what he feels comfortable doing. Don't want to push him. And we've learned that depending on the day depends on how he feels. Yesterday he was super tired, pale and in bed by 7, today he's more energetic! He loves to keep us on our toes!!

Feeling thankful no one is saying Gavin needs to rush to surgery right now. But at the same time we are still on edge. I should also know by now, this is our life with a CHD child. I know all my fellow CHD parents can agree on that! 

Thank you to everyone that has continued to pray for Gavin. Seriously, your prayers, support and our hope in Christ is the only things that get us through these hiccups. 

Wednesday, August 31, 2016

Update

Thank you all for reaching out to us and checking in on Gavin. He is doing well. He went back to school with no recess, PE or stairs. He comes home super tired but we're thankful he is well enough to go to school during the day. We heard from the surgeon this afternoon. All the doctors talked and it seems everyone is in agreement that Gavin should repeat a stress test. I am very thankful they're leaning on the conservative side and wanting to do every test possible before doing anything invasive. So hopefully we will hear from them tomorrow on scheduling the stress test! 

Our sweet friends from LCS continue to bring us yummy food which has relieved so much stress. I've been able to focus on the boys (give Brody extra loving and take extra time to help Gavin with his school work). So thank you again to everyone who has blessed us!!!! The precious lady, Traci, that started the meal train brought us food Monday night. Tracis husband, Russell, surprised Gavin with an OSU football signed by all the current players! What a special surprise!!! If you haven't met this family, you're missing out. Traci is one of the most giving, caring people I know!! Thank you again Claybrook family for your incredible generosity!!! We love you guys!!!

Kennedi & Gavin (they've been in class together the last 2 years) Love their sweet friendship!! 

Gavin and Kaden (Kennedis brother but also Gavins buddy!) Gavin had to get his Pistol Pete shirt on too! 

“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12 NIV

Monday, August 29, 2016

I am STRONG


When I started this blog 10 years ago I wanted to use it as a journal (that I have put into books) to show Gavin one day. I usually tread on the side of caution to not share to much of his inner struggles. I don't want him to look back one day and say "wow thanks mom for telling everyone my business." But this, this is really something I have to let out. Sometimes writing out my thoughts just makes me feel better. 

Yesterday afternoon was not fun. Gavin and I were sitting at the table working on some school work and talking. Adam and Brody had gone to the grocery store... Gavin stopped what he was doing and started to cry. "Why can't I just have a normal heart? Why can't I be like everyone else? Why me? Why did God do this to me?" I sat there, frozen, words would not come to my mouth. Then it hit me, a river of tears poured from my eyes, I sobbed like a baby. Most of you that know me, know I am not a crier. Then there are a few of you that have had to hold me like a baby while I let it out. I have always wanted to be strong for Gavin and never let him see that I am sad about his situation. But yesterday, I realized... it's OK to cry, it's OK to show my son that I am struggling with this too. I think it completely shocked him. We sat there and hugged and cried together. It was a powerful moment for the both of us. 

"For when I am weak, then I am strong." 2 Corinthians 12:10. Like Paul, I want to be strong in my weakness. I wish so badly, I had all the answers for Gavin. But I don't. One thing I do know is that we can't do this alone. We have to trust in Gods plan for our life and to use it to glorify Him, no matter what! 

A month ago, I went over to stay with Adams grandmother so Adams mom could go to OKC. Sitting there I picked up the Christian chronicle and found a post about a book called "I Am STRONG" by John S. Dickerson. I decided it looked like a good read and ordered it on amazon. And just like that, it was like God was preparing me for what was to come. Every word I read has been timely and comforting. 

Later on, I was able to gather my thoughts and remind Gavin that He is a child of God and just like everyone else He has a purpose to fulfil on this earth. That God has plans for him, not to harm him. He is loved by God and by many. And that in his almost 10 years of life he has touched more lives than I ever could. He has literally brought people to Jesus. And I have emails and messages to prove it. "God knows your pain. And He does have plans, as you trust in Him, to fully heal you of your pain, to fully restore you and redeem whatever you have lost. Until then, you can journey toward His strength with great hope. With each step forward, we trade our limits for His limitless; we trade our inability for His capability; we exchange our pain for His healing, our weakness for heaven's strength." -John S. Dickerson

Saturday, August 27, 2016

HOME

We made it home last night and crashed in our beds. Yesterday was such an emotional day for us. I think with confirming the news of what we feared was going on, just broke our hearts. More than anything I am sad for Gavin that he has to walk this long, bumpy road. But everytime I get down, he does something to make me smile. 

Today has been a GREAT day!! One of the precious moms on the 4th grade team periscoped the game this morning so Gavin could "coach" the team from the bed. He got so anxious that he had to move to a chair right up against the TV.
He was able to send comments and hearts to show love to the team. He wore his jersey and bit his nails with anticipation. Like I've said before he takes his role seriously. The thing that made me break down in tears was the helmets the boys wore today. One of the dads, Johnie and the moms, Sharolyn made "Gavin helmet stickers" for the game. 
It just makes me cry looking at it again! What amazing kids and parents. After the game Coach Steven brought over the winning game ball for Gavin. More tears! 
My sweet grandmother stayed with Gavin today so I could watch little man play. His team won 30-0 with Brody scoring twice! 
All of Gavins films will be overnighted to Kansas City on Monday. Hopefully we will hear from them next week on a plan. We will keep you all updated! 

Thank you again to everyone that has supported us this last week. Don't know how we could have done it with out you! And thanks to Traci for starting a meal train, what a HUGE blessing! 

"I have not stopped giving thanks for you, remembering you in my prayers." Ephesians 1:16

Friday, August 26, 2016

Heart Cath Update

Gavin got back to his room about an hour ago. He has to be on bed rest for 4 hours until we can get discharged. He was all smiles (as always) when they wheeled him in the room. 
So far Gavin hasn't vomitted (a first) post cath. We're thrilled! He called and ordered himself some chicken soup and he gobbled it up! 
This child is hilarious. He smiles through everything. He has the best attitude and tries to make light of everything. He asked for whip and nae nae again in the cath lab. He jokes with all the staff that come in and out of our room. Wish we could all be like him!! 

The cath confirmed what the echo revealed. Blood is pooling around the current coils and sneaking it's way back into the ventricle. When we were in Kansas City in January, the doctors told us they would have liked to put more coils in but his heart was getting angry when they tried to do so. So now we sit and wait while the doctors come up with a new plan. In the meantime, Gavin will have physical restrictions. 

Gavin is bummed that this is going on, but he tries not to focus to much on it! He got a special visitor once he got back to his room. Rufus the service dog! 
Rufus even left him a special friend to take home. :) 

After Rufus left, one of Gavins favorite NICU nurses, and first person to care for him at a few hours old, came by to give hugs. It's been our tradition for her to come by when we're admitted. Carmen, we are so proud of you and all the accomplishments you've made since Gavins birth. Carmen is now a nurse practitioner and works directly with the heart surgeon. We love you lady!! 
The plan is for us to come home tonight. Can't wait to get to our bed! Thank you all for the continued prayers and love. We couldn't make it through without God and the unending support of each of you. We are so blessed. 

“Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.” Colossians 3:15 NIV

Feelin' the LOVE

Yesterday, was an eventful day. We watched some baseball, played dominoes, walked around the nurses station, read a chapter book (thought that would get some brownie points with Mrs. B ;-)) and even made a few trips to the end zone. The end zone is a fun area where kids can play games, color, stuff a build-a-bear, etc. We could only go for 30 minutes at a time. Gavin is hooked up to a telemetry box that is being watched by medical staff. It shows what his heart is doing at all times. They can't get the information they need while in the end zone so we had to make the trips short. Gavin made the most of it and played lots of pinball monopoly and a fishing game with his Nana. Yesterday afternoon, Grandpa hooked Gavin up with an ice cream sandwich and played some dominoes with him. My parents dear friends, The Johnson's, happened to be here this week so Dr. Mitch joined in on all the guy fun! 

Gavin received the best surprise that literally had him smiling from ear to ear the rest of the night. Mr. P our awesome principal came up to visit Gavin. He brought him some sweet LCS gear and a real football helmet signed by all of the Varsity football players and coaches. Mr. Pepin prayed over Gavin before he left, we're so blessed!
 

Gavin received videos from his classmates. The girls did a Gavin cheer, the entire class sent a video message and the boys huddled up for a Gavin chant. It was the sweetest thing ever! 

Last night our sweet OKC friends, the Houstons and the Coopers brought us Gavins favorite pizza! He chowed down! 
Thank you all again for the food! And thank you Weedens for letting all our family stay at your house! You're always so willing to step in and help us! 


Gavin missed his first football practice as a "coach." He was slightly happy because it got cancelled due to lightning. He takes his job so seriously that he hated to miss it! The entire team got together in the field house to take the sweetest group picture. They held cards that said "We love you Gavin, you are Bulldog strong." If you follow me on FB, check it out. Didn't want to post it to the world without permission from all the parents. We're surrounded with some incredible, God loving families you will ever meet. I never take for granted that we get to be a part of such a fantastic school community. 

Before bed we got to skype this precious boy. He was getting teary eyed and missing us so we tried to make it fun. We "played legoes" and did some upside down talking. Ha! 


We love our little guy, he always knows how to put a smile on our face!

Gavin is still sleeping, we got him gowned up and they started running fluids around midnight. The doctor came in and said we will get started soon and it should be fairly quick procedure. Just want to get lots of pictures of his heart. They'll go through his groin again so Gavin will have to lay flat for several hours afterwards. We will update as soon as we can! Thank you again for all the LOVE, we feel it! 

Thursday, August 25, 2016

Gavin Update

Most of you know by now, Gavin passed out at school (again) yesterday. We are SO thankful for the quick reaction of Coach R, Coach B, the school nurses and our favorite counselor. Once again they handled the situation like pros. We feel so blessed and safe with Gavin being at LCS. The entire situation was handled calmly. I can't say enough about our school and staff!

For those that don't know, Gavin was transported via ambulance to OU Childrens in OKC so we could be with our cardiologist. Once here we started testing to rule out heart issues. 
(Little brother got to come up and visit before we left Tulsa) 
(Gavin getting on his expensive ride 😜)
This morning we got some discouraging news, still trying to process it all. The echo that Gavin had last night has shown changes from his echo in May. There is more blood pulling back into that ventricle that was coiled off in May. With that being said, Gavin will need another heart cath to get the specifics. So we will stay again tonight and do a heart cath first thing in the morning. Once we know specifics from that we will make a plan on any intervention Gavin needs. Please keep praying for Gavin, we know God hears our prayers and shows us miracles in these discouraging times. 

I want to share something I read out of my book at 4 this morning. It was so timely for me....

"We are learning to live as children who are deeply loved. We are learning to live with confidence that every temporary suffering will lead to eternal good, if we just stay near to our Father. Even when it hurts. ESPECIALLY when it hurts."