Thursday, January 9, 2014

New Year!

Between the boys birthdays & the holidays I am behind on blogging! 

Gavin is doing well in school. He absolutely loves his teacher & the fact that he has his 3 BFFs in his class! 


We carried on the Gavin/Brandon birthday tradition this year. We got to spend Gavin's 7th birthday in Cleveland with the Weedens. It was a fun trip and we made some great memories! Thanks Weedens!  By the way, stay tuned... Some exciting stuff coming up regarding the foundation! 


Medically speaking Gavin is doing as well as he can be. He got a bad stomach bug at the beginning of the school year that put him in the hospital. Not fun! So here's a little PSA: keep your kiddos home when they're sick, it can be life or death for others. End rant. :)


We got to stop the lovenox injections and then insurance decided to no longer pay for his home health nurse visits, so we spent a lot of time going to get labs.  Every time I step foot in the basement lab at SF it reminds me of a not so wonderful time. Right after Gavin's second open heart surgery (3 months old), he became addicted to the narcotics. The doctors started him on methadone. Basically, methadone is legal heroin. Apparently you can only get a script filled at a hospital lab. Which made for a pleasant trip with a screaming baby whose pupils were dilated and hair was falling out. I don't miss those days. So let's just say I was less than thrilled that our insurance refused payment for home health. Not only was the lab a reminder of horrible times but also a place filled with germs waiting to attack my immune compromised son.


We FINALLY received our home INR kit to test Gavin's levels ourselves. It's great that we can do a simple finger prick (which doesn't require as much blood) & do it from the comfort of our home! It's even better that I can call the nurse myself and we discuss therapy changes over the phone. It works out nicely! 


Gavin has a pacemaker check next week, prayers specifically that all is well. Our last pacer check showed some sort of "noise". Cardio is hoping it's just "noise" and not anything alarming. We will know more next week.


Gavin had neuro and opthamalgoist follow ups- everything checking out good in those departments! We need to get Gavin eating more! He has gone down on the scale percentile. Somedays are better than others on getting him to eat. But even on the good eating days it's not enough. Because he is only working with half of a heart he is burning triple the amount of calories a normal heart healthy child his age. To top it off he's hypoglycemic which makes things more difficult. Waiting to hear back from doctor on where we go from here with that situation. 

I know from the outside just looking at Gavin he seems so perfectly fine. But I just want to be honest for a minute. It's been a struggle. And before I go any farther, I know there are children in worse shape than Gavin, I know there are the littlest angels in heaven right now. I know there are parents that are having to make some really difficult decisions for their sick child. I know this and I try through every struggle to remember them and to find joy and peace. But sometimes it's hard, really hard. Sometimes I just cry myself to sleep. Sometimes I can't sleep. Sometimes I yell at God and ask him why? The daily medications (3 times a day), the blood draws, the finger pricks, the pacer interrogations, the input & output, the anxiety attacks, consoling him when someone has made fun of his "gross" chest or how small he is, playing football (which is so minute to me but something major to a little boy), the amount of doctor appointments, the "what ifs", future surgeries or procedures, etc, etc. Its hard. It's hard. It's hard. 

Today as I had a day of struggle, I opened my devotion and found this... But the Advocate, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you. 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 14:26, 27 NIV) These are the words of Jesus speaking to His disciples before His death. Jesus promises to send them the Holy Spirit, who will fill them with strength and comfort. God has given us a spirit of peace and not fear, so when we are troubled or sad we know that we can count on God to comfort us. When you are sad or afraid, do you feel the presence of God? He is there for you!

Thank you Lord for giving me peace & strength when I feel so weak!!

Wednesday, October 2, 2013

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. 


Wednesday, September 11, 2013

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. 

Thursday, August 22, 2013

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.


Wednesday, August 7, 2013

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! 

Tuesday, August 6, 2013

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.