Waiting in Limbo

Our little man is completely off of oxygen and most medications now. He also got the IV lines out of his neck today. He is only getting Tylenol when needed and he is being a champ!

Feedings aren't going super well. He is not latching on to the bottle and sucking like he needs to. They had to put the NG tube back in yesterday. He only gets about 10-20ml down at each feeding with the bottle and the goal is now over 40ml. What he doesn't take from the bottle he gets in his tube.  Although we are a little frustrated, the nutritionist is very pleased with what he is doing now. She would rather him take what he can in 20-30 minutes, then get the rest through  the tube so that he doesn't get frustrated, too tired, or associate feedings with being an uncomfortable time. So we are being patient... They have ordered a consult with the occupational therapist to see if they can assess any issues or gives us some tips.

If the feeding thing was his only issue, then we would be out of the ICU and into the step down unit now, but he still remains in heart block. So we are still here...

The heart rhythm specialist comes in to see him much more frequently now. She explained to us yesterday that the nerve that connects and regulates the pumping between the atrium and ventricles could have been damaged in surgery.  They usually wait about 7 days to see if a heart block will work itself out or if the nerve will recover or repair itself. Thursday puts us at 7 days with heart block, so a pacemaker was brought up as a solution.  Adding a pacemaker would be an additional open chest surgery, but not open heart, and they would go in through his current incision. They would place the wires on the heart and test which spots worked best, then close up his chest, and put the pacer box in his belly area. This will obviously require more recovery time, tubes that we just got out being put back in , and so on. Kind of a step backwards...

Today the same heart rhythm specialist spent quite a while playing with his current pacer to see if she could find a rhythm that would indicate that the nerve was working. She was really unsure, but she did measure what looked to be like two normal heart beats. Two is better than none, so she was slightly hopeful that this meant the nerve may not be completely dead. She is going to continue to monitor him frequently today to look for more signs.

We were scheduled for a pacemaker to go in tomorrow, but now she wants to give it a little more time and wait until at least Friday. But we are walking a rather thin line.  We (the doctor and Jamie and I all agree) don't want to put a pacemaker in if he doesn't need one, obviously.  But if he will need a pacemaker, we don't want to wait too long to put it in.  His current wires will not really do well past the 10 day mark, so we can't wait forever.  Plus, the sooner he gets the pacemaker, the sooner he can start recovery.

A pacemaker is obviously not what we want, but we do want what is best for him, I just wish we weren't down to the wire and the doctors didn't have to make this decision with the pressure of time looming over them.