Wednesday, November 25, 2015
This is Kristen. Dr. Overholt just came out and gave us an update on Gavin. Gavin has coronary fistulas where his underdeveloped ventricle is pulling blood. They injected Gavin with isopryl that made his heart race like he was mimicking exercise. In short...during exercise Gavin has blood flowing into his under developed left ventricle, technically where no blood is needed. This is complicated for the docs, they haven't seen hardly any one specific case they can remember like this, so they are going to reach out to other cardiologist and surgeons to come up with a game plan. This isn't a routine fix, so they need to seek out more guidance. If the fix can't be done through a heart cath, then we would plan for another open heart surgery, but not like any of his previous surgeries. This one would not be as complex. In the meantime, no exercise for Gavin. Please continue to keep Gavin, Faith, Adam, and the doctors in your prayers.
Friday, November 6, 2015
Well it's been a couple of months but I think it's a good time to give everyone an update on Gavin!
In my last post I talked about Gavin passing out at school. Well, since then he's gone back and fourth with the dizzy spells. In the recent weeks/month it's become much worse. To the point of having to pick Gavin up from school. At first we didn't know if it was in his head, that he was still scared from his passing out episode. But then he seemed to complain more and it became heightened during excerise. Gavin had his regular cardio appointment two weeks ago. His echo showed heart function was good but his heart squeeze wasn't great. After further discussions, Gavin had more test ran... EEG (to rule out neuro issues), and lab work. Those came back normal so we moved on to the next test. Gavin had a treadmill/stress test done. Gavin lasted maybe 3 minutes before he became light headed. He was on a major incline but hadn't made it to the running part yet. They stopped the test and spoke with the cardiologist. Gavins Doctor came up to talk with us. During the test, Gavins blood pressure and oxygen levels dropped abnormally low. His oxygen levels got to a 70, we haven't seen that number since his pre-surgery days. His heart rate didn't even get up to a high rate like it should during excerise. It was decided to run more labs to rule out some other scenarios. One example would be a viral infection that has caused antibodies to not allow a good heart squeeze. Gavin has tested positive for Epstein-Barr Virus in the past. If this were the case, we would look into Gavin getting infusions. The next step is to do a tilt test and heart cath. The plan is to do them the same day (looking at sometime around Thanksgiving). Gavin needs at least 7 days prior to the heart cath to be off of Coumadin and on lovenox (yuck) injections. While our hearts are broken, we're still encouraged. Encouraged to be with an incredible team of doctors that carefully and dillegently make decisions for our son. Encouraged that we have a wonderful group of friends and family that go to our Lord on our behalf. And mostly encouraged that we serve a God that is bigger than all of this, that He will walk us through this, as He always does.
As always, smiling and being goofy. Love this kid!
Tuesday, August 25, 2015
Obviously I have been horrible about keeping up with this blog!! Over half way through 2015 and I would say Gavins health has been pretty good. He had a scare earlier in the spring. He passed out at school and required an ambulance ride to childrens. After being checked out, all was well. He was diagnosed with vasovagal syncope. The doctors believed he had a drop in blood pressure that caused him to pass out.
The 2014-2015 school year also brought changes! Gavin started 2nd grade at Lincoln Christian school. LCS has been a HUGE blessing in so many ways. We're thankful to God that we have the opportunity to put both of our boys in a loving, Christian environment. The smaller classroom sizes, prayer time, etc have helped Gavin tremendously with his anxiety!
(2015-2016 Brody, kindergarten Gavin, 3rd grade)
So here's to the rest of 2015 and getting better at updating this blog!!
Thursday, January 9, 2014
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
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
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.
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:
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
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.