Day 2

Another busy day from the start... Gavin had a PFT & a GFR. The PFT is to check his lung function and the GFR checks his kidney function.  

The GFR was a long process of blood draws for 4 hours, as usual Gavin smiled and joked with the medical staff through it all. He had the sweetest, happiest spirit. (Look at all the tubes he had to fill)

 

We had several rounds with the cardiology team and with the neurology team. We started the wean of one of Gavins medications too. We had "transplant school"... a little overwhelming. We went through a booklet and had question time with the nurse coordinator and pharmacy team. We signed the consent forms in case we get to that point. Tomorrow Gavin will have a CT angiogram of his heart and lungs. Hopefully we will have some time to squeeze in hospital school and a visit to the playroom. Friday he is scheduled for a cath at 1pm. Monday he will have a test with electrophysiology team. They want to rule out any arrythmia  issues. In the meantime the doctors will consult with the adult heart failure doctors to see if/what other tests they can do on Gavin. We hope to have some more answers by Friday. 

 

We finished our states puzzle and have played some rounds of golf during blood draws. Of course daddy wins every round. We miss everyone at home, especially Brody! Daddy is excited to get home to him this weekend and stay with him next week. Thank you all for the prayers, we continue to feel them!

 

“If you don’t know what you’re doing, pray to the Father. He loves to help. You’ll get his help, and won’t be condescended to when you ask for it. Ask boldly, believingly, without a second thought."

‭‭James‬ ‭1:5 MSG‬‬

Day 1

As soon as we got to the hospital, the tests began and we've been going ever since. Gavin had lab work, EKG, echo, stress test, ultrasound of kidneys and bladder and a chest X-ray. Gavin didn't last as long on his stress test as the last time. He became out of breath and tired after 9 minutes. He had a few changes on his EKG. The doctors just came up to talk to us and brought up some things we hadn't heard before. One of the medicines Gavin is on can cause exercise intolerance so they would like to try and wean him off of it. In the mean time they will continue the pre transplant evaluation and testing. They have decided to hold off on putting him in ICU and starting milinorone. Which is all encouraging because they want to rule out every possible sitaution before even considering him for transplant. So we kind of feel like we're back to square one of not knowing 100% of what is going on with him. I appreciate their honesty and not wanting to jump the gun on listing him. The doctor brought up that once you have a transplant at his age your starting the clock for the next one. They still plan to take Gavin back to the cath lab on Friday to measure pressures and look at the coils. Please pray that we get answers, that's all we want. It's so frustrating that Gavin has been on the decline this last year and we don't have any absolute answers. All we know is these fistulas are new and they are NOT common in a Fontan patient. So no one really has anything to compare him to. Thank you to everyone that has reached out to us today. We don't have the best cell service here and we are BUSY during the day!

 

Gavin and his heart buddy Caysen.

 

Gavin gearing up for his treadmill test.

 

Special visitors 

 

 

Thankful

Yesterday, our little man was baptized. For awhile now hes been discussing with us his desire of making this happen. We couldn't be more proud of his decision and his new birth in Christ! It was a last minute, head to the building and make it happen moment. We're thankful to everyone involved that help make it happen. Grateful for all our family and friends that were able to make it on such short notice. Gavin was thrilled to have most of his football team and fellow classmates there in support of him. Some pictures from the special evening...

 

 

 

 

 

Just to show the impact Gavin has made on others in his life... his principal, school counselor, school nurse and all of his teachers 1st-4th grade were there. His 1st grade teacher was a complete surprise and we were so thankful she was there!! 

 

 

Gavins 3rd grade teacher has a special connection to the group Stars Go Dim. They sent Gavin a video, he was able to watch before his baptism. 

The last couple of weeks, Gavins had some special visitors. It's helped to keep his spirits up! He's even skyped his class and text with his school mates. He's spent a lot of time with his cousin Parker since Aunt Kiki is homebound teacher. Seriously guys, I can't tell you what a blessing it's been to have her teach Gavin and keep him up to date with his school work. And an extra special shout out to Mrs. B, Gavins 4th grade teacher, she is hands down amazing. She goes above and beyond to help ease this transition we're in right now. I know she spends so much time getting Gavins lessons together and making sure we have what we need. We're so blessed. 

 

 

 

Today Gavin & Brody had their Thanksgiving Parties at school. We took Gavin to see his friends. Once we walked in the door we realized everyone had on a custom made Team Gavin shirt. One of the precious moms had them created for all the students to wear. Between yesterday and today, the tears have been flowing! 

 

The class puzzle, they saved the last piece for Gavin to put in. Love these kids and their fantastic teacher!

Precious classmates praying over Gavin.

 

And of course, we got to go to this little Indians party too! I love this time of year and the excitement it brings!

While I was at school I received the call from St. Louis Children's. We will leave Monday to check into the hospital Tuesday morning. Gavin will undergo several tests for 2-3 weeks. He will be inpatient the entire time. Once we get the official word on transplant and what status he will be, will determine if we stay until the heart comes. We were told today to come prepared to stay until Gavin gets a heart. To be honest, my stomach has been in knots trying to process all of this and how quickly it's all happening.

If I could ask for a specific prayer right now it would be for our Brody. I don't usually say much about how he is doing through all of this because he is usually fine. This is all he knows, this is his life. He's been passed from house to house while we're away with Gavin during procedures. I will say he is definitely taking this hard. Please be in prayer for his peace while we're away from him for some time. For the majority of the wait it will just be me and Gavin, so thankful Adam will be with Brody to keep some normalcy at home.

We are so thankful for all of you, the prayers mean so much as we start this new journey. Happy Thanksgiving friends and family! 

Transplant

We've been in contact with Gavins medical team off and on this week. Gavin continues labs to keep track of his INR levels for his Coumadin treatment. He continues to rest and keep his cardiac out put low. Which we are content with because it keeps him symptom free!

Thursday morning I spoke with Gavins cardiologist who was out of town when Gavin was hospitalized. He wanted to catch up and see how we felt about all the conversations and treatment plans we discussed in the hospital. He said he would call back after they conferenced yesterday. 

Every Friday a team of heart doctors, surgeons, nurses, and medical staff meet about different cardiac patients. They discuss their situation and what plan of treatment would work best for that child. Gavin was a part of that discussion yesterday. About 6:30 last night, Gavins cardiologist called... Adam and I put him on speaker and listened as he told us what they felt would be best for Gavin. It has been decided that instead of doing any intervention, it would be best to list Gavin on the heart transplant list now. Everyone agrees it would not be favorable to Gavin to open him up and try something that we have no idea will even work. Essentially we knew this day would come, just didn't think this soon. For years we've been putting a bandaid on Gavins heart, and the bandaid just isn't working anymore. 

What are we feeling? We're feeling mixed emotions. We feel a sense of relief that we have a plan. We feel sad, knowing that another families grief will be our joy. We also know that getting a new heart isn't a cure, we're trading one set of problems in for another. But we also feel excited about the quality of life Gavin will have, and we pray that his new heart will last him a very, very long time!

Please be in prayer as we go on this journey. This is a whole new world for us. We have a lot to learn! We're thankful for the many transplant parents that have already reached out to us and helped us in the beginning stages. 

Monday, OKC will call STL Childrens to get the ball rolling. In the meantime, Gavin will have more labs here to check some other heart function levels. 

Thank you to everyone that has prayed for us. We feel your prayers! Gavin is in good spirits but desperately misses his friends and his school. 

As we come upon Thanksgiving, we have so much to be thankful for. When this all started around this time last year, we honestly didn't know if Gavin would make it to Christmas. We had such a grim outlook and there was not a lot knowledge on his situation. I am so thankful he was able to have a procedure that gave us another year with him. Here we are, planning his next step in the journey. And I am just thankful, thankful God has given us this opportunity. 

“give thanks in all circumstances; for this is Godʼs will for you in Christ Jesus.” ‭1 Thessalonians‬ ‭5:18‬ ‭NIV‬‬

Thy Will

It's been so nice to be home, in our own beds without the distractions. Wednesday afternoon Gavin had an ultrasound at the hospital after I voiced my concern for his facial puffiness. A couple of hours later we got word Gavin had a small blood clot (again) that would require medicinal treatment. We were told we would have to stay another night. Thankfully the doctors came up with a different plan. They decided we could go home, do medicine and labs there. Friday, Gavin had labs and got a flu shot. We got word that afternoon his INR level was low, so we have increased meds over the weekend and will go in tomorrow for more labs.

Friday I went to school and watched Brody in his Veterans Day Program. 

 

After, my sister and I met with Gavins teacher to go over school work. My sister (a certified 4th grade teacher) will be taking over homeschooling Gavin until he can go back to school. It's such a blessing to have my sister step in and help us while Gavin is home bound. I decided to clean out Gavins locker while I was there, I opened the door and tears filled my eyes. God's little reminders that He is in control. 

 

Friday night my mama kept the boys so Adam and I could have a night to be with our friends. It was great to have a night of laughter. We're blessed with some amazing people in our life. We have so many friends that have called & text us to ask how they can help. We're so appreciate of them all!! 

Saturday we had a restful day. Gavins cousin Carson spent the day with us, while Brody went to hang out with his cousin Cayden. We enjoyed playing games and watching movies. It was nice to have a little change up and keep Gavin entertained. 

 

This last year has been a doozy. However, through it all God shows up and gives us little reassurances. One is that we have come full circle with one of our favorite NICU nurses, Carmen. Carmen was the first person to give Gavin his signature Mohawk. Most importantly, she loved my baby when I couldn't be there with him. She was there for me to lean on, a shoulder to cry on. I remember thinking this lady is remarkable! She worked the night shift and had a young daughter at home, each night she would call her, read and sing to her over the phone before bedtime. I remember thinking, I want to be a mom like her, I want to be a nurse like her. Once we left the NICU and eventually the hospital, we promised to stay in touch. Every appointment, every hospitalization we would text and she would come up to take a picture with Gavin. We now have ten years worth of pictures of Gavin and Carmen. 

 

Carmen has furthered her education and became a nurse practioner. She is now certified to work with pediatric patients. My heart felt a huge sense of relief once I found out she would become a part of Gavins current team. This lady has been there for the hardest days of my life, and now she will walk me through a new, even harder journey. It gives me chills to see how God has worked out every single detail.

Today my sweet mother offered to keep Gavin so we could attend worship. Our series right now is titled "The Fight." The last two weeks have been about "Worry, Worship & Warfare." It couldn't be a more timely lesson(s) for me. Brother Mitch talked about how we should deliver our troubles and trials to the hands of the Lord and how God's time is not always our time. I can't count how many times a doctor has said "be patient, in Gavins time, in Gavins time." But the bigger picture is God's timing. He has a plan for us far beyond our imagination. And just like the story about our favorite nurse, God works out every single detail of our life. 

Even though my heart is breaking, I will trust His will. 

I'm so confused

I know I heard you loud and clear

So, I followed through

Somehow I ended up here

I don't wanna think

I may never understand

That my broken heart is a part of your plan

When I try to pray

All I got is hurt and these four words

Thy will be done

Thy will be done

Thy will be done

I know you're good

But this don't feel good right now 

And I know you think

Of things I could never think about

It's hard to count it all joy

Distracted by the noise

Just trying to make sense

Of all your promises

Sometimes I gotta stop

Remember that you're God

And I am not

So

Thy will be done

Thy will be done

Thy will be done

Like a child on my knees all that comes to me is

Thy will be done

Thy will be done

Thy will

I know you see me

I know you hear me, Lord

Your plans are for me

Goodness you have in store

I know you hear me

I know you see me, Lord

Your plans are for me

Goodness you have in store

So

Thy will be done

Thy will be done

Thy will be done

Like a child on my knees

All that comes to me is 

Thy will be done

Thy will be done

Thy will be done

I know you see me 

I know you hear me, Lord

Thy Will -Hillary Scott

Latest Update...

To get everyone caught up... Gavin was admitted to OU on Monday. He was having chest pains, stomach pains, facial puffiness and nausea. Once we got to OKC clinic they decided he needed to be admitted for tests and observation. All of the labs for his heart enzymes came back great so we're thankful that a heart attack was ruled out.

For the last year Gavin has been on the decline with his heart. He's had multiple symptoms and episodes that's had everyone on their toes. Once we were settled the discussion of putting Gavin on transplant list came up. We discussed options on where we could do this and where the docs felt would be our best option. Since that discussion more doctors have collaborated and decided that we will try a cath/hybrid approach to try to eliminate more of the problem. They just can't guarantee that these fistulas Gavin has will not keep growing back. That is where transplant comes into play. The doctors (once everyone is back in town) will have a conference next Friday to make an official plan. In the meantime, they're not opposed to us going to STL to get the transplant ball rolling. But at the same time we may not have time to even start that process with how quickly they're wanting to move to the cath/hybrid procedure. So as of now we're putting the transplant on the back burner. Again, this is not a black and white situation. Gavin has a very complex heart anatomy and everything has to be taken into consideration. We need everyone to pray for the doctors discernment and wisdom in all of this. To be honest, while I was sad about transplant being in our (more near) future, I am also feeling a sense of relief. The last year has been rough and eye opening. I hate how much time Gavin has spent in a hospital and been put under for procedures. We just want him to have quality of life.

Gavin is currently in ultrasound to look at his veins and arteries in his neck and arms. If all looks good, we will get to go home tonight. While we wait, Gavin will be home bound again with minimal activity. Keep praying that we will have more solid answers on how to approach this situation.