We had our monthly follow-up with Andrew’s cardiologist yesterday. As much as I really like Andrew’s cardiologist, these appointments exhaust me. Yesterday’s was no exception. We knew going in that it would be a long afternoon with an echo, ekg and doctor appointment all in one. In addition, the only appointment open in this time frame was in the main Phoenix office, which is much busier than the small Scottsdale office we usually frequent.
Andrew was great. We talked before the appointment about what was going to happen at the doctor’s office. He is obsessed with knowing “what next”. After talking through the appointment many times, he was ready. He smiled and charmed everyone. We even saw our friend Steve who is the medical assistant in the Scottsdale office. He wasn’t our medical assistant yesterday, but he stopped by to check out Andrew and give him knuckles. Andrew weighs exactly 12kg or 26 1/2 pounds and is 38 inches tall. Still a peanut! His blood pressures were all his normal… low in the right arm (narrowing artery), really low in the right leg (occluded arteries in his groin) and good pressures in his left arm and leg (no issues there!).
He was such a good boy with everything… and is growing up so fast! Yesterday, he laid on the table all by himself for his blood pressures and EKG. Usually he sits in my lap, but he was was good on his own until the EKG stickers had to come. Those are really sticky and he is still really protective of his “owies” on his chest. The EKG looked normal… still no sign of the arrhythmias that he had post-op in the hospital. However, we are also still on meds to prevent them from occuring.
Next up was an echo. Andrew also did great with laying still and letting the tech “take his pictures”. An addded bonus was that the movie Cars was playing on the tv in the echo room. However, the tech finished too quickly… before Mater came on! It was pretty cool because she took some time to make sure that I got to see his Fontan conduit and also his Glenn. The bigger he gets, the easier it is for the tech to point out different things on the screen. One our echo was done, it was back to the room to wait… and play cars!
Then Dr. Lindblade came into check Andrew out and chat. He is very impressed with how healthy and happy Andrew looks. His lungs sound clear (yay! no chylothorax!) and his heart function looks great on the echo. He still has mild regurgitation (leak) in his tricuspid valve. This has always been mild to moderate, so no reason to be concerned about it now. The fenestration (think pressure release valve) between his new fontan conduit and his heart is still being used. Normal is a pressure gradient of 5-8 and Andrew’s is at about 8. Because everything looks good, we get to come off of Digoxin. Always good when we can lose a med. However, we are staying with everything else for the time being. So, Andrew is currently on 2.5mg of Enalapril (2x a day), 60mg of Amiodarone (1x a day), 15mg of Lasix (1x a day), 10mg of Aldactone (2x a day), 6mg of Sildenafil (3x a day), 81mg of Aspirin (1x a day) and 0.5mg of Coumadin (1x a day, Monday-Friday only).
So here is the plan… continue to go in every week or two for an INR check (coumadin levels and a whole post by itself!). In a month, his INR check will also include getting a Holter Monitor. Once the doctor gets the results from this Holter he will call us to discuss. If all looks well, we may try to wean the Amiodarone at that time. We go back to see Dr. Lindblade one month after that (2 months from now). At that appointment, we will do another Holter Monitor to see how he is doing off of the Amiodarone. If all looks well, then we will continue off of the Amiodarone. However, if there is any sign of rhythm issues, we go back on it. I have a feeling that we will be very used to wearing a Holter Monitor in the future! However, it is a pretty easy thing to wear and it doesn’t seem to bother Andrew.
So overall, he is doing great! He is enjoying school and looking forward to it getting cooler (hopefully soon!). Thanks for checking in with us. I will do another post just on the Coumadin and the battle of the INR after Friday’s check.


