Monday, May 26, 2014

Well, that was easy.

Our little 14 month old, Miles, had his 9 month post open heart surgery cardiology appointment.

From start to finish, the appointment was 3 and a half hours. They take forever, but that is okay.
We check in, we head to floor 3 which is cardiology, fill out some update papers and wait. M is all over the waiting room and so excited to be running free. We get our little beeper and it goes off about 5 minutes after we sit down.

Start off in triage, where they do weight/height/pulse ox/blood pressure. Sometimes they do a mini EKG. We got to skip that this time. Then we head off to the exam room.

After the exam room, we head off to ECHO! Whoop! The tech asks if we want to strap his arms down and we deny that. She asks if we need to wrap them, we say maybe, but let's start off with not. We just plopped him down and pulled out our little bag of goodies to keep him busy.

ECHO starts and so far, so good. Lots of red & blue on the screen, you can see all four chambers, and that is as far as my expertise goes. Yup. I can't read ultrasounds well. Hence the reason why we never found out our babies' genders.

After a super long ECHO and all the toy "freshness" worn out, it is complete. Now we move back to the exam room and wait. And wait. And wait. Our cardiologist has to read the report and watch it just prior to coming in to speak with us.

Miles is climbing the walls, the chairs, under the table, under the desk, opens everything and scrapes his legs from falling over a million times. I never bring enough stuff to keep him busy.

Anyways, the card comes in and we chat. We get our questions sort of answered (we still see cyanosis and he sweats too much still). The answer is essentially that he will probably always do that since his heart is repaired and not 100% perfect. We can accept that and since we have a pulse ox at home--I'm cool with it. After the chat, he tells us to come back in a year! A YEAR!!! We get a full year before we have to return. This is HUGE in the heart world.

This is a quote from a mom on one of my heart boards~
"One of the surgical team explained it to us in terms of sewing. When you repair a shirt, patching the hole "fixes" it, but the very act of sewing on the patch also damages the shirt. You create stress points where the needle goes in and out and where the thread tugs on the cloth. You may say this is "as good as new", but it isn't because you have more risk later on. Risk from both the original hole and the repair work. Chances are good you'll never have problems, but you still have to watch out for it. Our son is doing very well, but a repair is not a cure. He will have to see a cardiologist for life."

Next up for me is to order his medical records. In full. Including the nurses reports.  I'm just in the part of our journey where I am ready to read about my son's battle with CHD.

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