We’re supposed to go home tomorrow so…

OF COURSE we have problems that surface today that means there is no way in the ‘verse that we are going to be doing that on Monday or Tuesday.  Rowan puffed up.  When you have heart failure, your body stores up fluid.  Lasix is a medication that makes people pee out the extra fluid.  Rowan has been on this for almost all of his life because his heart has to work harder than it should right now. The puffiness lends to the theory that something is making him work harder than he has been.  So today they put him on IV Lasix to de-puff him, which is working very well, and trying to explain what is causing the puffing.

Entonces….

The problem: why is he building up more fluid and having lower oxygen saturation rates?

Suspected answer: the shunt that was put in during the Norwood procedure may have narrowed.

What causes that?: Lots of things.  The BT shunt is fickle and comes with lots of complication risks which is one of the reasons they do the Glenn and get it out by 6 months.

How do we know if the shunt has narrowed?: He’ll need another cardiac catheterization, which is a procedure he would need to be intubated and paralyzed for.

And if they find out the shunt is narrowed?: Then they would need to stent it, or since he is almost at the 3 month mark, there may be talk of doing his next surgery, the Glenn. We are not sure if that is really an option at this point.

So what now?: Tomorrow morning is “BIG ROUNDS” with everybody.  We are going to ask the surgeon his thoughts and find out what the “team” thinks.  We are also working on figuring out if he needs to have his cath here, or if he can have it in Tulsa.  Because he looks clinically different now, we are also trying to determine if insurance will now transport him back to Tulsa.  The hospital here is fighting to try to get us back to Tulsa, as long as we can all agree that Rowan can be treated there.

So tomorrow the questions we want to ask are:

Does he need a cath?

What will we do if the cath shows a narrowed BT shunt?

Can the cath/procedure needed to repair the shunt if it’s narrowed be done in Tulsa?

Can we transport him there for it?

What are we looking for from Rowan to know that he is ready for the Glenn?

So once again, we wait.

What are we hoping for: AN ANSWER. And unfortunately it is the one thing you almost never get with a kiddo like Rowan.