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
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