Cardiologist update

I spoke to Christopher's cardiologist by phone yesterday. He reviewed the results of the MRI with me and confirmed that the puckered spot on the GoreTex patch is causing about a 50% blockage in that area. He said that he had reviewed Christopher's case with the other cardiologists at CHEO, and "the one thing that we all agree on is that if he could just grow a whole lot overnight, everything would be fine," because the patch would stretch out. Unfortunately that's not going to happen, so they have to figure out what to do in the interim. And although there has been discussion of a number of options, it seems there's no real conclusion yet.

The issue is complicated a little by the fact that Christopher's heart is starting to show some signs of strain from pumping against this blockage. I didn't think to ask on the phone how much of that will be reversable if or when the blockage is relieved.

The doctor told me that he will be asking to present Christopher's case (via videoconference) for cardiology rounds at Sick Kids next week, so lots more people will be able to weigh in on the situation. We are very pleased that they are seeking lots of input before making a decision. It seems that this is such a rare issue that not many people have experience with it.

Christopher has been having spells sometimes where he becomes very pale for a while - sometimes ten minutes, sometimes up to an hour. We have been telling ourselves not to worry too much about them because he is alert and happy when they happen. However, I mentioned them to the cardiologist yesterday and he was quite concerned. He's not sure what the cause is but he wants me to page him if it happens again so we can take Christopher in to the hospital to have a Holter monitor put on him. It will just involve having sticky pads put on his chest, which will be connected to a little recorder that we'll tote around with him for 48 hours or so. The hope then is that they will be able to catch an episode and see if he's having any abnormalities in his heart rhythm when the episode happens.

He's also booked for another echocardiogram on Tuesday, this time without sedation (thank goodness). We'll be meeting with the cardiologist after the test, presumably to discuss the next steps. We are pretty anxious about all that is happening right now.

The positive news is that he is gaining weight really well and hitting all of his developmental milestones. He continues to be a happy, mellow kid who smiles all the time. He even giggled for the first time tonight!

Here are some photos of Christopher and his #1 fan: