Patrick had an appointment with Beth at the heart center today. Gary was the unlucky one who was tasked with weighing, measuring, monitoring, and echo-ing a squirmy, opinionated 7-month-old. Gary was great. Patrick was…difficult. But they were able to get enough information to tell us that Patrick is doing well. Things look the same as last time–the tricuspid valve is pretty leaky but that’s why they did the Glenn procedure. As long as the right side of his heart holds up under the pressure from the regurgitated blood, there may not be a need for more surgery in his future. This is sort of uncharted territory so we’ll have to see how it goes, but the cardiologists seem pleased with how he is doing.
In fact, he has graduated from his amiodarone–a once daily med he has been on since he was born. Amiodarone prevents the SVT (super-high heart rate) episodes that Patrick had a couple of times as a newborn while still in the PCTICU. At this point, P has outgrown the dose he’s been on and since they have been planning to take him off of the drug anyway, it is better to do it now rather than up the dose. It will take awhile to clear from his system, so in a month or so we will start a 21-day ACT monitor again (he had one for the first couple of months last Fall). I’m not that excited for the monitor, but it will be so nice to have the peace of mind knowing that the doctors (and us parents) will be alerted if his heart does something funky. AND we are happy to have him off of one more drug. Now all he will be taking is aspirin once a day for the rest of his life (to avoid any blood clots in his heart–particularly the troublesome right side).
Patrick doesn’t need to go back to the clinic until after we’re done with the ACT monitor–so not for two months! After that we may only need to take him every 4-6 months. How rad is that?
We should be hearing from someone regarding physical therapy–Patrick is lagging a little on some of his physical development. His sternum is wired together, and you can feel the bumps under his scar. As you can imagine, this makes tummy time a bit uncomfortable. Also, because the Glenn procedure re-routed the blood from his upper-body, a natural bi-product is that his head has gotten bigger (in relation to the growth of the rest of his body). With his head so heavy, he hasn’t quite gotten sturdy in the sitting position. He’s a strong kid, though, and he’ll catch up. He just wants to skip sitting and crawling and go to walking–if he had his way we’d have him standing, jumping, or walking (assisted) ALL the time.
These photos are from his last regular pediatrician appointment–he’s getting caught up on the immunizations we had to postpone during the pre and post-surgery time period. (Tia, Patrick’s nanny, was nice enough to come with me to the appointment. Six needles…three in each leg! He was a trooper, though.)
Hole Hearted 