Tough pill to swallow

My heart and head have been heavy this week, need to clear my thoughts... I have a love/hate relationship with this blog. Mostly love though, it documents everything Gavin has been through, what an incredible story to share in detail with him one day. It's also a great tool for keeping all of our family and friends updated without having to make sure I've told everyone. One of my favorite things about it is the connection I've made with other heart moms (and dads)! I am not kidding, the second after my sister posted last week I had SEVERAL heart moms message me about some great facilities that specialize in this situation. It also brought attention to Gavins FABULOUS surgeon who took the time to text me Wednesday night to say he's ready to see film and do whatever he can to fix Gavin up. Which was such a God thing because I was in mama bear mode, up all night praying, and researching! 

Wednesday did not go how I planned. My plan was we would go in and get immediate results with a super easy fix, go home and enjoy Thanksgiving with our family. Instead, it started out with Gavin getting an IV that heavily bled out due to a loose tube. This resulted in lots of crying, multiple people coming in to fix the issue and lastly having a child life specialist come in to calm his fears. Back up a little bit... Gavin is usually very calm, easy going when it comes to medical care, especially an IV. We are talking about a child who has experienced multiple IV's (including in his head), shots (including ones he's given himself IN HIS STOMACH). I say all of this because he is ONE TOUGH KIDDO! I think all of his anxiety is partly he doesn't feel good and partly we have taken him off his anxiety medication. He's had medicine changes recently, one being Prozac. Gavin has been on Prozac since his pacemaker surgery 2012, in which we think caused PTSD. A long with that he is a heart patient, which we know comes with many emotions. He has been through SO much in his 9 years, he definitely needs some medicine to take off the edge. More on that in a minute. 

Back to Wednesday... After he settled down our cardiologist came in to go over the tests Gavin was about to have. We discussed that Gavin no longer had the dizzy spells after taking him off one of his new medications and lowering his blood pressure medicine. We informed him though that he was still very tired, out of breath a lot, and complaining of chest pain. He even experienced chest pain and vomiting the week before. He had been missing a lot of school, and we had made extra appointments in OKC to try to figure all of this out. One Sunday he slept through worship and complained of chest pains that afternoon. It was so bad we took him to the ER to get checked out. Every appt, every ER visit, his vitals always checked out fine. The only appt that gave us any answers was his stress test (which he did so poorly on) and his echo which showed his heart squeeze was also poor. Hence the reason for scheduling a tilt test and heart cath. Once it was determined that Gavins dizziness was pretty much non existence our cardio decided to cancel the tilt test that morning and go straight to the Cath lab. We were impressed with his intuition after the cath was over... 

Gavin was in the cath lab about 4 hours. I received two phone calls from the nurses, by the 2nd one I started getting concerned. I asked her if everything was ok. She said yes and that Dr. O would hopefully be out soon. Shortly after that, another cardio walks by and into the set of doors where the lab is. I leaned over to Adam and said "why is he going back there?" Adam brushed it off and said, "oh I am sure there is another patient back there." Later, that second cardio, Dr. W came back out and comes over to us. He told us Dr. O was still working on Gavin. He informed us of what they had found and needed consent for another dr to come in and use a camera to go down Gavins throat. During that process they would inject Gavin with a medication that would increase his heart rate to simulate exercise. They wanted to do all of this to confirm what they had found and see if it coorelated with Gavins symptoms. About an hour later they were finished and Dr. O came out to talk with us. We were told it was a rare situation and not seen much. So they were all puzzled and scratching their heads on what to do. Would it be best to do a heart cath or go into open heart surgery? What we know is it's a coronary fistula. We know that with physical activity, it can come some serious complications. But we're keeping it on the positive spectrum and claiming none of the complications will happen. We will also be smart about it and keep activity to a minimum. 

Earlier I was talking about the Prozac, we also plan to restart that (once we discuss with doctors) to help Gavin. He's had a rough weekend, just riding an emotional roller coaster with him. Yesterday was especially rough and he's having a hard time falling asleep at bed time. We're hoping to know more on Monday once all the doctors are back in office from the holiday. The plan is to get films out to the OKC surgeon, Gavins surgeon and other facilities to see where we go from here. We should know much more next week. Thank you all for your out pouring of love and prayers. We are so, so blessed. Now let's just talk about how handsome this boy is?! 

My prayer for you sweet boy...  “In peace Gavin will lie down and sleep, for you alone, Lord, make Gavin dwell in safety.”

Psalm 4:8 NIV 

Gavin's Cath Update

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.

Calling on Gavins Prayer Warriors

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!