Sunday, February 19, 2017

Something Beautiful

Some have asked for updates on the boys health, and to be completely honest I haven't felt very positive or uplifted recently, so I took a break from my blog updates. Then it was getting to the point where I was struggling to retell everything that's happened in the last month. So here's a short version...

I needed a break from blogging, from our story, a time to refocus and to pray. I needed an attitude adjustment. Don't get me wrong, it is completely ok to be scared, upset or concerned about circumstances in your life. But getting stuck in that place is not ok, and that is where I was at.

Since Christmas break Gavin has come home from school almost once a week. He's had some days of chest pains, and days of just not feeling well. He still sleeps a lot and gets out of breath easily. The one positive I can say since taking him off most of his medications, he hasn't passed out! Hopefully it will stay that way! We go back to St. Louis March 1st to re-evaluate. Please be in prayer for this appointment, we just want peace about Gavins health. A transplant is not a cure all, so I am not even asking for prayers that we go that route. A transplant brings on an entirely different set of issues. I think wisdom for the doctors and peace for us as a family is what we need most!

Brody had his follow up at Cooks regarding his elevated CK levels and elevated liver enzymes. They've decided Brody will need a muscle biopsy and another set of genetic tests. So we're waiting to hear back on a date for that. When you see Brody it's as if nothing is even wrong with him. Which is so puzzling. His labs tell a different story. And it's not the kind of labs you just sit back and ignore. There's damage being done somewhere, it's just finding where. He has occasional stomach flare ups but nothing like he did when this entire situation started over a year ago. We know that God is bigger than any "abnormal labs" and that He can heal Brody from whatever is attacking his muscular system. I don't say that lightly, I truly believe it. 

In the midst of all of this Adam came down with the flu and was stuck in OKC for a week. At the same time, I was admitted to the hospital after having a health scare. We like to do things big around here, you know! God bless my family for taking over my children's busy schedules, lunches and getting them to and from school. And thankful for dear friends in OKC that made sure Adam was alive in his hotel room. I mean I have no idea what we would do without our army that surrounds us. We're truly blessed with the best support team on planet earth! 

While I say we're so blessed with a support team, it hurts sometimes to think how "needy" we've been, especially the last two years. I hate having to rely so much on others. I know that's what friends and family are for, but I want to be the one helping someone else for a change. I am a "doer" and this has been extremely difficult for me to sit back and be the receiver time and again. But this all goes back to be stuck in that rut, where the enemy is feeding you lies, getting you down and keeping you there. Last week I read this post on Facebook and it really hit home for me.

"Does it feel like the enemy has been attacking you over and over in an area of your life? Maybe this week has been extraordinarily painful and seemingly hopeless.
Oh, how I wish I could take you by the hand right now and whisper, “I understand.” Because I do. I really, really do.
But here’s what I love about our relationship with the Lord. We can bring Him even the most broken and devastated parts of us… and He will use them to make something beautiful."
So Lord I am asking that you will help me to see a purpose in all of this, help me to see Your purpose for Gavin, for Brody, for us as their parents. Help me to make it something beautiful. 

Monday, January 9, 2017

Christmas Break

We had a wonderful Christmas break. My parents had planned a trip to Big Cedar Christmas 2015 but had to cancel because Gavin was in the hospital. My mom rescheduled for 2016, and we thought we would have to cancel it too. We were so thankful Gavin was discharged from St. Louis in time to go on a family vacation! We had a great time just being with family and keeping it low key. I think we've decided this should be a tradition every year, no gifts, just time together!
Thanks Mom and Dad for creating special memories for the boys!

Adams sister came in town and we enjoyed doing fun activities with Adams entire family. We went to Margarittaville, ice skating, movies, game time and celebrating our nieces 16th birthday! 



Gavin has only been back to school one day since break. They started last Thursday and were out Friday for a snow day. Today Gavin had a cardiology appointment in OKC. We went over Gavins transplant evaluation and how he's been doing since we've been discharged. This time a year ago, Gavin was on 13 medications. We have him down to 2 now, trying to make adjustments along the way. The med they took him off of in St. Louis was his beta blocker for migraines and vomiting. The cardiologist asked if Gavin had noticed changes or if we had since he's been off of it. At first we thought he had some more energy than before, but then discovered that comes and goes. Gavin had a day during break that he had chest pain/paleness, and continues to squat during play. He continues to go to bed early most nights (especially school or busy days) and sleeps in some. We will be interested to see how he does with going back to school more now. The doctor wanted him to keep up his playing (of course no impact sports or forced competive play) and see if he can build up a tolerance. We're hoping the more conditioned he is the better he'll feel. We go back to St. Louis on March 1st for another work up and evaluation to see where Gavin is at. We all agree (doctors included) that Gavin is just a mystery right now. We're hopeful and believing that Gavin can have a complete turn around and get back to how he was two years ago. We just need more answers to figure out how to make that happen. When Gavin was a baby I would always ask the medical staff "when will he do this? When will this heal? What's the next step? When will we be discharged?" And so on... the answer was always, in Gavins time. It's funny how that statement has continued to ring true throughout his ten years of life. I love my little mystery boy! 

Thanks to everyone that continues to pray for Gavins health. Where would we be without all your prayers? Thankful for our God, that hears them all. 

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!