Hurry Up and Wait

My son is being kept alive by a medicine called prostaglandin.

Today, they turn the medicine off.

If this experiment works, he may be able to avoid the surgery he was expected to undergo this week. If it does not work, he will get blood in his lungs and have a really difficult time breathing. Doctors will reverse their decision and he'll be bound for surgery.

It is a low-risk, high-reward gamble. Certainly, we don't want to see him any discomfort, but he is in the Cardiac Intensive Care Unit at one of the best Children's Hospitals in the world and they will be able to react quickly to signs of trouble. We should know within a couple of days to a couple of weeks if this is going to work or if he will need the surgery. We can't make the determination until a certain duct closes and we see his reaction. The closing of the duct depends on nature and is different in everyone.

This is good news. They've discovered that the narrowing of his aorta -- the coarctation -- is not as pronounced as they thought and they don't automatically need to do surgery. They're willing to try this alternative in an attempt to limit his fragile body to just one surgery, likely to take place six months or so down the line. That is a really big surgery and they want him to grow a bit and be stronger.

If this works, we might be taking him home as early as next week.

Even the good news of taking him home is a scary proposition, because we will have sole care and responsibility for an infant with a serious heart condition, but we're willing to take that on because we don't want Tyson growing up in a hospital. He's going to spend enough time here.

I wish I had more to report. There is a lot of hurry up and wait here. You get all geared up for the next step only to be told it is a lengthy process. They really want him to grow more because it will be easier to determine the problems and easier to fix them.

I also wish I had something funny to report. Not a lot of jokes and laughs in the cardiac unit. I will, however, expand on something I said in a Facebook post (and this has nothing to do with my particular situation): hug your children. Count your blessings. Quit griping about your daily problems. I've seen teenage heart transplant patients, babies who will be vegetables all their lives and kids who have to worry about taking their next breath. This place is a dose of reality and a slap in the face to what real problems are. I can't comprehend what some of these families are going through and  I have incredible respect for their strength.

Ok, enough soapbox.

In other news, we did learn that he does not have any of the more obvious genetic diseases associated with heart defects. They are conducting further testing.

Really, mostly everything has been positive. He is strong. The deformities seem to be less than expected or at least in the right places for best-case scenarios. He's far from out of the woods, but things are definitely going our way.

I've been off since Friday. I don't have a lot of time because it is a new job,  so I need to get back in. Brooke, trooper that she is, is making mega strides in recovering from the C-section. She'll do most of the monitoring for us.

We will keep you updated.