If you read Kale's caringbridge site, then this is a double post...
Wow...just wow! God is sooooo Good!
I write this with so many different emotions. My head is still spinning a bit. So please bear with me if any of this doesn't quite make sense.
Kale had a cardiology check up this morning. During every check up, Kale gets an EKG. This involves attaching 16 probes to him and all of them are on his abdomen and chest area. Ever tried to attach a bunch of stickers and then a bunch of clippy things to a 15 month old wiggling and curious boy? After the third time he ripped them, which appeared to be quite fun for him, we knew it was time to step up our game. I held his hands, daddy held his feet, the tech finished attaching everything, and the tech in training made everything attached to the ceiling move (toys, mobiles, etc). I think he realized he was not going to win, because he decided to just lay perfectly still and not fight us. We weren't stupid enough to let go though! Thankfully, it only takes about a minute or less of recording and then we are done.
We then went to the room to wait in the doctor. We saw a different doctor today, as our normal doctor is somewhere else (in an entirely different country) tending to kids like Kale. Our doctor is quite well known for his work and is in high demand...so he is always on the go. I really liked the doctor we saw today though. She put me at ease and I felt comfortable with what she told us.
We found out that Kale had outgrown his current dose of his medicine. Since he has not had any issues with SVT (fast heart rate), they have decided to take him off of his medicine. He is quitting cold turkey because as he grew over the last six months, he was slowly tapering himself down in his dosage anyway. Kale would grow but the dosage stayed the same...so he tapered. The doctor actually said that we could go home and just throw the medicine in the trash. Wow. That kind of shocked me. Its going to be a few days before I am ok with doing that. I don't know why. Maybe its because that medicine feels like a security blanket. Even if Kale were to have an episode of SVT, the medicine would do us no good...as it takes a while for his body to respond to it. Still...just not ready to toss it yet.
We go back to get put on a halter monitor for a 24 hour period in a couple of weeks. Oh yea! I can't wait to see how we will manage to get him to leave it alone. They said that we could bring him to the clinic and they would attach it for us...and I readily said that would be great! Unless he has an episode or the monitor picks up something during the 24 hour observation, then he will continue without medicine until his next check up, which will be a year from now. Wow!! See....wow!!!!
I can't tell you how much fear and relief is all rolled up into this change. I think its understandable. I just have to remember Who is in charge and let Him handle it for me. I can say that it will be nice to not worry about having some medicine with you at all times and trying to coordinate who gave him the last dose or if someone forgot to give him a dose...and all the general mayhem that goes around that kind of thing.
As for the 'holding the breath' incidents. Our cardiologist today also used to be a pediatrician. She said everything we shared with her, which was everything from the first incident until now, was very classic 'holding the breath' response. She said that he will eventually outgrow it. She said it might be a year from now when he finally stops doing it. Great. Well, at least we know its not some other major health issue. She reassured us and answered all our questions. We discussed him being lethargic for a little bit (5-10 minutes) after an episode...and she said that it was hard work to hold your breath until you pass out...and well, she has a point! I don't recommend you try this to find out! The doctor said she doesn't anticipate us having to call 911 for Kale, but if he keeps giving us these heart/panic attacks when he holds his breath, then we may need to call 911 for one of us!
So, that is where we are....we ask for prayers of praise that Kale's health...we ask for prayers that he is able to remain medicine free....we ask for prayers that if he does have SVT occur without the medicine that we are able to catch it and deal with it accordingly...and we ask for prayers that he quits holding his breath and that when he does hold his breath that we are able to keep our sanity and remain calm during the process.