Anticipated Cardiology Visit

Today was Owen's much anticipated cardiology appointment. I have been anxious to see an echo so we know what his little ticker is up to. Since his last echo we have made some significant medication increases in hopes that it will do some good.

We started off with Owen's weight check... 25lbs baby. Thanks to the tube, he has never had an issue gaining weight. Then we moved on to his blood pressure 85/54, good pressures. Owen chit chatted with the blood pressure machine... he says "beep, beep, beep" right along with it.
Next came the EKG. He has always been fascinated with the stickies they put on him. He helps put the clippies (for lack of a technical term) on and then he watches while we wait.

Dr Stock has two great echo techs and Owen adores them both. We tried to convince him to watch a movie which was a bust as usual. He'd rather watch the echo monitor and talk to the tech the entire hour. He did get a little squirmy at the end, but Dr Stock saved the day when he gave him his IPhone with Green Day rockin' on it.

Then we went back to the room to wait. Dr. S was extremely busy today, so we made it snappy. The good news is, Owen's heart hasn't gotten any worse. The bad news is, it hasn't gotten any better either. It's the same. His function is still moderately decreased and his tricuspid valve still has severe regurgitation. There were no major surprises, so I'm happy.

We will continue to increase his Carvedilol (beta blocker) until we reach the maximum dose of 10mg a day. We have another appointment in two weeks to followup.

I spoke with Dr. S quickly about Owen's Gtube surgery and since Owen is stable, we got the go ahead to do the surgery at Phoenix Children's. Just to clarify, a Gtube is a button that is surgically placed in his tummy for feeding. I have put it off for 19 months and it's now time.

We have an appointment with GI on Monday and Dr. Graziano (the surgeon) next Wednesday. I want to get it done before flu and RSV season roll around.

I spoke with Stanford when we left cardiology today. I gave an update on Owen's echo today and let them know where we are with the medication increases. Ideally, they would like Owen on his maximum dose of Carvedilol for four weeks before doing another clinic/evaluation. I suggested we push back his appointment at Stanford until the end of October so that he will have maxed out his meds for at least four weeks prior to our visit. So that's the new plan with Stanford. No Gtube surgery there. Just a cardiology visit in October and perhaps we'll turn it into a little family vacation!!

Owen is not currently listed for a heart. He does in fact need a transplant, there is no way around that. He only has the right half of his heart, the left side is shriveled up like a raisin. His right ventricle and atrium is extremely enlarged. His function is moderately decreased and his squeeze is weak. His tricuspid valve (the valve that delivers blood from the right atrium to the right ventricle) is severely leaky. They could replace the tricuspid valve at some point, but his heart squeeze isn't strong enough to tolerate the new blood volume and pressures.

Technically, he could be listed for a heart right now. When listed for a heart you are put into a status, based on need.

1A is the top of the list, you are hospitalized on iv medications

1B is next, you are home on iv medications

2 is last, you are home and stable, controlling your heart failure with medications

Owen would fall in the last category, status 2. The chances of him actually getting an offer for a heart are slim to none in this status.

Another issue we are up against is Owen's antibodies are extremely sensitized. He is 98% sensitized, which means that he is at higher risk for acute rejection and is limited to the donor hearts he can receive. We attempted IVIG and Rituxin (chemo) treatments in January and didn't see significant success. We will do more IVIG and be more aggressive with the treatments when the time is right.

For now, since he is stable and doing okay with the oral medications, we will postpone transplant as long as possible. It seems silly to hear that we want to postpone our son's heart transplant, but it's for the best. Heart transplants come with their own set of problems. Rejection, immunosuppression, biopsies, and when it comes down to it.. I am very scared at the idea of my son getting a new heart. I'd like to put it off forever, but that's not going to happen. It will all happen when it is meant to.

Owen will get to a point where he starts to decline. He will show further signs of distress... sweating, heavier breathing, fluid retention, ect. We will continue to see Cardiology every three weeks until we get to that point. When he reaches the point that he needs to be started on IV medications, we'll know it's time to list him for a heart and start aggressively treating his antibodies again.

Until then... we will enjoy every waking moment with him.

And he'll continue to be spoiled with suckers and stickers at every single doctors visit along the way.