Monday, December 5, 2016

Day 7

This morning Gavin had an EP pacemaker study. 

Basically the electrophysiology team paced his heart fast and then slow to see if he had any arrhythmias. Thankfully no arrhythmias showed up. However, once Gavins heart rate went to 180, he had chest pain. The tests (as most of them we've had) we're inconclusive. 

Gavin also had an EEG and consult with the GI team. 


When the GI doctor came in Gavin started his preaching. The GI doctor said, (while looking at Gavins chest), "man you have some battle scars. Do you tell people, you should see the other guy?" He said "no, I know who the other guy is, the devil, I am on Gods side, the battle is won and the Devil has lost." You should've seen the doctors face. I am so proud of Gavins boldness and eagerness to talk about God. Love my little preacher man! 

Gavin had hospital school today too. Trying to get caught up from his missed days last week! 

Gavin also had some special visitors from the Blues hockey team! Of course with his candid personality they had the cameras rolling. 




So we still have no definite answers. Which means we get to come home, unlisted. When we got here they wanted to take him off his beta blocker because they think it was exasperating his symptoms. They didn't want to discredit the fact that Gavin has these fistulas. But because the transplant tests are inconclusive they can't make a transplant determination on that alone. But since they've taken him off the beta blocker completely, the hope is Gavins symptoms will improve drastically. If he still passes out/becomes symptomatic, then they will have more sway on the transplant decision. They said they'll be in constant contact with Gavins doctors at home. And because we're thinking no on transplant right now does not mean we're done with them. We will come back to STL in 3 months for a repeat of some of the tests, and to revisit Gavins situation. They gave us a notebook full of Gavins history and information to carry with us in case of an emergency. 

I am MORE than thrilled that we're holding off on transplant but also concerned about Gavins quality of life when it comes to playing. I'll be interested to see how much he plays once we get home. Please pray with us to not live in fear and trust that Gavin will be ok. We're going to try and make things as normal as possible and get back to school. The doctors want him to do what he can tolerate but try not to be the overachiever he is. He doesn't need to over push himself and learn to stop before he thinks symptoms are coming.

Pray for our safe travels home. The doctors weren't planning to send us home until tomorrow but we said we want to go tonight. Thankful they're letting us go!! 

Thank you to all our family and friends that have gone out of the way for us. You all have stepped up to the plate in so many ways. We rely so much on our family and friends through the journey with Gavin. I pray that I will have opportunities to bless you all back. Seriously, know how grateful I am.

We're so thankful for the fresh set of eyes here and the thought process of making a major medicine change. Once again, God has given us another Christmas miracle- two years in a row. Feeling beyond blessed.

Sunday, December 4, 2016

Day 6

We slept great last night, finally. Today when the doctors made their rounds they asked if Gavin wanted to get out on a pass today. Of course we took advantage and hit up the Zoo. My dad actually has a friend that runs the Zoo, he was incredibly thoughtful and gave us the VIP treatment while we were there. Gavin is still having tummy issues and not eating much, but seems to be much better than yesterday. He was in better spirits today too, crying and missing home yesterday. It was a nice break to get out of this place for a couple of hours! 


This pic sums up his afternoon/evening yesterday.

Gavin got to FaceTime the Park Youth Group this morning, thanks to his sweet friend Delaney. They prayed for him, such a precious gesture. Gavins bible class sent him a picture too! He felt the love from our church family this morning! 


Sweet boy fell asleep before we even arrived at the Zoo! 



It's snowing!


We spent some time at the Night Light, Christmas event. 


Thank you to Mr. S for an awesome afternoon/evening at the Zoo!! We had a blast! 

Gavin is resting up and watching Elf. We're trying to get him to eat some food before he has to be NPO for his procedure tomorrow. Keep praying friends for answers/solutions! 

Saturday, December 3, 2016

Day 5

Today was a lazy day. Gavin was super agitated most of the day. He was having stomach cramps, more than likely from post anesthesia. We took a trip to the playroom, Gavin made some slime and we played several games of Jenga. Nana and Grandpa came in town on Friday to be here for Gavins cath. Daddy and Grandpa drove back home today. We're going to miss them! 





We took a walk this afternoon to see the train in the hospital entrance. We walked outside to see the Christmas lights in the garden. Then back to the room to watch Christmas movies. 



Tonight we moved to a different room. I'll post the room number on the Team Gavin page. If you've already sent him something, no worries, they will get it to our new room! 

We got word from Brody's caretakers that he is having so much fun with out us. He didn't even want to stop and talk to me earlier! He had his first basketball game today and then went to our friends house to play. They even built gingerbread houses! Thank you Reid and Alissa for loving on our boy today! My sister and brother in law kept Brody Friday night, they made snowman sundaes. So much fun! 




I can't wait to squeeze his cheeks! 

Friday, December 2, 2016

Day 4

Today, Gavin had a heart cath. It was diagnostic as there were no interventions needed. We still don't have any definitive answers as to what is going on with Gavin. They can tell there is still blood getting into the LV, but can't prove that's what is causing Gavins symptoms. Hopefully we will have a chill weekend. Gavin is absolutely exhausted from all the work up. Monday, Gavin will have a test where they interrogate his pacemaker to try and make him have an arrhythmia. Please pray we get some kind of answer from that test. Tuesday, Gavin will have a liver biopsy. It is part of the transplant evaluation. Fontan patients can develop liver issues so they want to rule everything out. 



The nurse had a Polaroid camera to take his pic before the cath. He thought it was the coolest thing ever! 


Sweet boy in recovery. When he woke up he was quite the comedian with his jokes. He yelled "roll tide" as they moved him from the stretcher to his bed. He was very polite to the recovery nurses and told them "thank you for taking care of me today!" They said they couldn't wait to take care of him Monday for his next procedure!

His favorite nurse said she would be back Sunday and would request she could be his nurse again. He said "perfect, we can have church together, did you know I was recently baptized? I took my first communion on Sunday and my brother led singing. My brother loves to sing all the time, in the shower, in the car, everywhere!" I love how he always makes sure he throws his spiritual wisdom in conversations and loves to talk about God. 

He quickly became nauseated and started vomiting for awhile after the cath. He became very itchy (which has happened before post cath) so they started an iv dose of Benadryl. He quickly fell asleep. About 8:30 he was finally able to stand up on his leg (they went in his left groin). He's pretty agitated at the moment and starting to itch again. Hopefully another dose of Benadryl will do the trick and he'll have a restful night!

Before the cath we were able to meet with the transplant psychologist. It's so important to have that time to share our feelings and ways to cope. It's also important for Gavin and Brody to have the same opportunity. Gavin will have more time with her next week. Gavin will start hospital school on Monday and will continue if we are here through the end of next week. 

Thank you all for praying, calling, texting or sending words of encouragement to us. We're so blessed with an amazing support system!! Keep praying for answers and if there is an alternative way to fix what is going on, the doctors will have divine wisdom on that!

Thursday, December 1, 2016

Day 3

What a day. Just thinking about it makes me tired. We had some down time this morning. Gavin enjoyed face timing Mrs. P's first hour HS girls. They sang him Christmas carols, which put a HUGE smile on his face! Shortly after face timing them he looked out the window to see Santa cleaning the windows and waving at him! 


Gavin was NPO all day and took it like a champ! He is currently stuffing his face and watching the Good Dinosaur. Mid morning he had a CT angiogram of his heart and liver. 


Then we went to ultrasound for his veins and arteries. 


We came back to our room for a short time before we headed to the adult hospital to do another type of stress test with radioactive material. Today, we had an awesome nurse, our favorite so far! We hope we get her tomorrow. 


Gavin showing her his motivational video that Mrs. B introduced him to. Check it out here. Just another example of Gavin being a witness.


Finally finished with our tests and heading back to the room to pig out! This guy was a trooper having to be NPO all day!


We came back to our room to see this. Gavin said he would hang this ornament on his Christmas tree and be thankful for his situation every time he saw it. We've had a lot of conversations about how well Gavin has done for his situation, some of these sweet angels on earth go to their Heavenly Father, way to soon. Which speaking of, the first day we were here, Code Blue on our floor was called. It's hard to watch your boys face as people start running out of your room to tend to the situation.

Tomorrow Gavin will have a heart cath at 1pm. We hope we will have a plan if we will proceed with transplant listing or go another route. Monday, Gavin will have a test with the electrophysiology team so hoping that will give us some answers too! Sorry for a jumbled post or grammatical errors. It's my bed time! 

Wednesday, November 30, 2016

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

Tuesday, November 29, 2016

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