A lawyer in the making...

Today Gavin had pacer & cardio clinic in OKC. All in all a great appointment. His pacemaker looked good, doing its job! As of right now looks like he has about 10-14 years left of battery. This time frame can change depending on how much his heart uses the pacer as he gets older. At this moment he is using it 50% of the time. They adjusted his pacer to turn down the sensitivity on it. There was some interference noise that they want to rule out as anything else alarming. We will know for sure at his recheck in January. His INR levels were high, so we're adjusting medications again. He will get labs again in a week. They are working on getting us a home test kit. It is a finger stick like what diabetics use for glucose tests. This will be so much better than the weekly home health lab draws. Gavin is a hard stick and it takes a lot of blood and time. The finger prick will be easier and faster! Hoping to have the kit by November. We will have a home pacer check in January. Then go back to clinic 6 months from now. Gavin's neuro sent us a referral to see the neuro in OKC for a second opinion on the pupil situation. We're waiting to hear back from them for an appointment. 

During cardio clinic Gavin asked Dr. Overholt if he could sign up for flag football. Gavin is getting to the age where he realizes everyone else is playing sports. He is very passionate about sports. He wants to play everything but especially football. We try not to bring up football to him and we've pushed him towards golf and baseball. But now that his best buds are playing football, basketball, & soccer- he wants to join in on the fun. Today he pushed and pushed the convo to happen. Pleading his case, how tough he is, how he wouldn't let anyone touch his pacemaker. He even promised not to fall. Dr. O asked him if he was planning to be a lawyer because he'd make a great one someday! Ha. Dr. O rubbed his back and explained to him the risks of high impact sports with not only a pacer but with Coumadin. Gavin was about to tear up but took it well. Dr. O said we will see if he's still interested in all of this in the spring and we will go from there. He wants Gavin mentally to feel a part of "normal" kids but stressed the physical issues that can occur. Which we are totally on board, we try to let Gavin do what his body limits him to do. But we also know as parents we have a responsibility to keep him safe. Honestly, after everything we've been through with him, this has been pretty painful. It's heartbreaking and hard to tell your child they cannot be/do something when all we want to do is tell our children they can do anything they set their mind to. Asking for prayers for wisdom and words to share with our Gavin. 

I should write a book...

It's just become one crazy scenario after another around here. Lets back up to about 2 weeks ago. We thought Gavin's pupil situation was getting better then it came back. It has been more episodic than constant. Gavin's eye started swelling and he developed a rash like redness from under his eye all the way down to his chin line. He cried and rubbed his eye most of the day. He kept saying it hurt. The entire situation progressed after we went to the neighborhood splash pad. He thought he got something in his eye. That evening I decided to take him to urgent care so he could get some relief. We got to see our favorite NP Jill. She took great care of Gavin!! After consulting neuro & ophthalmologist it was determined that he had contact dermatitis. Steroids, Benadryl and hydrocortisone did the trick and it looked better with each day! (We go to ophthalmologist this Friday for follow up)

Now lets move on to last week. Gavin came home from school, a little cranky and tired. That night we get to a restaurant and right before walking in he pukes everywhere. He seemed to be fine the next day but I decided to keep him home to be on the safe side.

Thursday he was great so I sent him to school on Friday. That weekend my mom and I took the boys to Texas to visit family and take them to GWL for the day. We drove home Sunday and all was well. Until Sunday, middle of the night. Gavin woke up vomiting everywhere. I had taken Benadryl because I was dealing with nasal/allergy issues. It really knocked me out which scares me now because I don't remember much of the night. Thankfully Adam was home and got him showered and cleaned up. Gavin went back to bed. I got him up the next morning to shower and see how he was feeling. He got in the shower and vomited again. I was starting to think he had a virus. We took him back to our favorite urgent care and spent a couple hours there getting him to drink fluids to stay hydrated. We get home and our home health nurse came over to draw his usual INR labs. We started collaborating with cardio, home health and the urgent care. We started to wonder if it was drug toxicity from his Coumadin. We were worried his INR levels were high. At that point he became more lethargic and not interested in drinking. 

                     My pale boy :(

After further discussion Gavin was admitted for IV fluids yesterday. He continued to have diarrhea but perked up after fluids. Thankfully, all labs came back normal and same with stool samples. So he came home this afternoon. He drank some Gatorade and slept for 4 hours! 

Tonight he's back at it again. Diarrhea full force, but at least he's drinking and not so lethargic. Put in another call to cardio to make sure we were doing everything right. We will just keep a close eye on him for the coming days. 

Well of course we couldn't leave Brody out of this story! He joined in about 2:30 this morning with several vomiting episodes. I came home from the hospital to care for him while Adam cared for Gavin. Well after his last throw up session he perked up and started running laps around the house. He was eating and drinking and acting normal until this: 

Yes, that's staph infection! Just what we wanted to end this glorious day. Thankfully the dr didn't think it was contagious. But need to stay in for 24hours. We started oral meds, so we're ready for them to kick in! Hoping we're just getting all our sickness out at one time.

Back to sterilizing and laundry I go... Hoping tomorrow is not as eventful as today. In fact I hope it's boring, very boring. 

FIRST GRADE!

Meet the Teacher Night:

The 3 amigos and their brothers

Miss. Williamson, Gavin loves her! We couldn't be MORE excited that she is his teacher!

First day of school 8.22.2013

Love this picture, walking to school.

Will & Gavin

Olivia & Gavin in the walker line

Lil' bro missed big bro while he was at school!

It was a great first day, I have a feeling it will be a GREAT year. Gavin has progressed so much emotionally since kindergarten. We will forever be grateful to his kindergarten teacher, Ms. Armstrong for helping him get through it. 

Update on Gavin

Before I post about first grade I want to give everyone an update on Gavin. Two weeks ago we had the ER incident. Gavin went to the neuro and the ophthalmologist for a check up. They do not think its Horners Syndrome & were hoping it would resolve on it's on. By the time we saw the ophthalmologist, his eyes were looking more normal. Well, now it's back, but more episodic. Some days you barely notice it and other days its more prevalent. Tomorrow will be the two week mark since we saw Dr. G last, so we will make another appointment with him to make sure all is good. 

The home health nurse came off and on for several days, Gavin had 4 lab draws in one week! His poor veins were sick and tired of all the poking and prodding. His levels have finally dropped to a more normal range, so we get to go two more weeks without a lab draw. The cardio office is trying to get us an INR home test kit, so we can just prick his finger instead of getting lab draws. Even though Gavin takes the sticks like a champ, it's hard for a six year old to understand why he is having to do this so often.

Gavin finally got outside to play with his friends and ride his bike. He was exhausted after a couple of hours. Thankful he had the energy to get out and play!

A couple of weeks ago we lost a dear friend, Larry Seidel. It's only appropriate that I pay tribute to him on Gavin's blog. When Gavin was born, we lived with the Seidels in Edmond. They took us in their home, fed us, washed our clothes, and treated us as family. They never hesitated to welcome us in their home, even when Gavin had appointments and other surgical procedures. Their home was Gavin's first home. A couple of years ago the Seidels moved to Texas to be closer to their children and grandchildren. So I put their Edmond house key in Gavin's baby book. We will never forget their loving home. We will forever cherish the memories we had with Larry.

Today

Today Gavin had lab work and an appointment with the neurologist. I would say Dr. Siegler is his favorite doctor. Gavin always says, "I just love him, he makes sad kids happy!" He truly is a great doctor, brings a lot of laughter out of Gavin when we spend time with him. Dr. S consulted with Gavin's ophthalmologist during our appointment today. They decided to run some more tests, so we will see Dr. Groves in the morning. Hoping for good news!

After the appointment with Dr. S, Dr. O (Gavin's cardiologist) called and said that today's labs showed that Gavin's INR levels were higher. He said to stop the Coumadin tonight and we will do a smaller dose tomorrow. In the meantime, we need to keep him in a bubble so he doesn't get cut or bruised. Not an easy task with 2 boys! Home health will come on Friday to draw more labs and we will go from there. Hoping things level out before school starts, that will just be an added stress... Thank you all for the continued thoughts and prayers! We feel

them! 

Gavin's stash of daily meds! 

ER adventure

Well it is 2:30 in the morning and we're heading home from the ER. Gavin's pupils haven't been symmetrical. As in the left pupil is way bigger than the right. After sending a picture to our nurse and medical friends, it was apparent we needed to call the doctor. Put in a call and thankfully Gavin's cardio was on call. He said to email the picture. So I sent him the email. He called me and told us to take Gavin to the ER immediately to have a CT scan done. Once we got there they had the hardest time getting a stick for the contrast. His poor little veins are blown and they had to poke around twice to get it in. And it still wasn't the best stick, they had to pull it out a little during the CT to get the contrast to go in. Gavin finally teared up in the scanner room and asked if he "could just fall asleep?" I said of course, and he fell asleep. I felt so bad for him tonight I just wanted to take his pain away. I would trade places with him if I could. 

It looks like Gavin has the symptoms of Horner's  syndrome. The two stents were placed in his jugular vein. It looked like it was swollen in the area which could cause his pupils to dilate "unequally." He still needs to be seen by his neuro, so we will put in a call to him tomorrow. Home health will come on Wednesday for more lab draws, pray for good veins!! Feeling thankful tonight. It could've been a lot worse. Thankful for great medical friends and for an amazing cardiologist that takes such wonderful care of our son! God is good, ALL the time!!

My poor baby.

Great News!

Today we went to children's to get Gavin's labs drawn. We just received a call from the cardiologist. His INR levels were great so we get to stop the injections until Wednesday. Home health will come and do another lab draw. If his levels stay the same we get to quit the injections all together. Which is super!!! Poor G is already looking beat up from injections, IV's and lab draws. 

The boys relaxing today. Trying to keep a 3 & 6 year old from wrestling and injuries is no easy task! 

Blessed

Gavin wants to thank everyone for all of the gifts, cards and well wishes!! He received packages in the mail from his aunt, uncle & cousins in Tennessee. A bag of things (to keep him occupied in the hospital) from his favorite kindergarten teacher. He got lots of goodies in the hospital from his great grandparents, grandparents and family friends. He came home to more treats, like yummy donuts that were left on our porch. Today, he got a balloon guy & candy from the Weedens. He wanted me to help him thank everyone for the special treats and gifts that put a big smile on his face! He loves you all! 

Home

Came home to Gavin's "BFF's" and a welcome home sign! Gavin absolutely loved it! 

These two were thrilled to be reunited. Brody was timid, worried he'd hurt his brother. He loves his big brother so much! 

Gavin was due for an injection at 10:30, sweet Brody held Gavin's hand to "help him be brave!" I love my boys and their relationship. 

There's No Place Like Home

Finally. We're heading home! Thank you all for the love and prayers. Means the world to us. We're so blessed. 

For where two or three gather in my name, there am I with them.” (Matthew 18:20 NIV)

My Superhero

I love this little quote. It always makes me think of G and all the kiddos out there that go through so much. Speaking of, a young lady came up to visit with us during Gavin's procedure. She was born with HRHS. We got into a discussion about scars and how it affects the children. Gavin goes in spurts of embracing his scars and hating his scars. Recently, he told us how it's ugly and he doesn't like it. The young lady has a tattoo on her arm that says, "His scars cover mine." How cool is that? I can't wait to share that with Gavin, to help him when he struggles with the appearance of his chest. 

If you're wondering, we are still at the hospital. Waiting on Gavin's IV antibiotics to finish. Waiting on Walgreens to bring the injections for the week and waiting on discharge papers. We will go home at some point this evening! 

        My precious boy, sleeping away. 

Today

Today has been a good day. Of course, we're tired from last nights dinging machines, lab draws and vital checks. 

We're hoping to go home today. We had a refresher course on Coumadin. We survived our second injection, a little squirmy but no tears! Now we are waiting on the case manager to find us a home health infusion nurse to do Gavin's daily lab draws. The nurse will also pre-fill Gavin's lovenox injections so they will be ready for me to administer. The hardest part of all of this is going to be keeping Gavin from injuries. He is a very active kiddo. The main concerns are bruising and risk of bleeding. 

I'll update again once we find out when we are going home.

Gavin ordering more lunch because his soup "had no taste"... Gotta love hospital food. 

     

Nana and Gavin having a shoot out. 

Can you page the nurse?

Gavin is an awesome patient. He always has been. He never complains, and does exactly what they ask of him. Tonight he's had to lay completely flat and keep his leg still for at least 4 hours. He finally turned to me (after no complaining) and said "mom can you page the nurse?" I asked him why, and he said "I need to ask her if its time to walk yet!" So we walked two times around the nurses station and he talked my ear off the entire time. I just love him and his sweet, talkative personality. Now he is resting peacefully. 

Several have asked how he is doing. He is great! He experienced some blurry vision in post op, but that seems to be gone now. And this is the first time in almost 7 years, post anesthesia he hasn't thrown up. Woo hoo!! He is eating and drinking like a trooper. Of course, he's had nothing to eat or drink all day. He did a great job of not complaining, even though his cath was delayed by 3 hours! 

Tonight he took all of his meds and we survived his first lovenox injection. He said he "almost cried." I thought to myself, me too buddy, me too! But we made it through and I think we will do just fine with it at home! 

Thank you again to everyone that has checked on us and prayed for Gavin! We hope to go home tomorrow after his dose of IV antibiotics. Sweet dreams! 

Update 2

Gavin had two stents placed. We will start antibiotics, Coumadin and lovenox injections tonight. He said depending on how we feel about giving Gavin the injections will determine when we go home. Which we've done feeding tubes, so I can handle giving him a shot. The injections will help level out his INR levels for the coumadin. Gavin will get weekly lab draws to make sure his INR levels are good. He will also require a special diet on the coumadin. Gavin's had coumadin before but the lovenox injections are new. If everything goes as planned tonight we will go home tomorrow night. It's been a long day, thankful for the support and medical technology! Can't wait to see my baby! 

Update

There was a delay due to an emergency situation. Gavin went back at 4:00pm. It should take about 3 hours depending on what they have to do. I'll update once we hear from the doctor. Thank you all for the supportive texts, calls, messages, etc. We feel the love and the prayers! 

Funner Stuff

"Dear God, please be with me while I am in the hospital. And please be with Brody while he gets to do funner stuff." -Gavin's prayer last night

Tomorrow, Gavin will have his heart cath. I will keep the blog updated on what we find out. He is scared, but he is also a tough little dude. Specific prayers, for his peace, for everything to be fixable via cath & of course for the doctors and medical staff. 

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27 NIV)

Swing from the Heart 2013

The second annual Brandon Weeden Swing from the Heart golf tournament happened earlier this month. Once again, we had a great turn out! This year was a lot of fun. The night before the tournament we had a tail gate dinner, along with a putting contest. Every one had a great time! Gavin had a blast and enjoyed playing golf with Brandon and with Adams team. Adams team won the tournament. The Weedens did a great job hosting the event, we love them and their giving hearts. It was a great weekend and we are looking forward to next year!

Desmond Mason was a big hit! 

Gavin's best friend!

Hanging out with Melanie and Aaron

Gavin loves Sean!

Gavin with the doctors from Children's 

Gavin welcoming everyone to the tournament.

OU Children's Doctors

Nana and Grandpa were Gavin's caddy's

Wes, Nana, Uncle Shawn, Brady & Adam 

Dr. Mantor 

3rd place team

2nd place team

1st place team

 Dr. Ward, one of Gavin's cardiologist

The winning team

What an exhausting day!