Setbacks
The past few days have been a little rougher for us. Both Bill and I are beginning to feel the strain of doing this routine over and over. It’s not like we haven’t been enormously blessed and have had such a smooth experience thus far, but we are entering a lull and need to get over this hump for the sake of our sanity. We’ve heard from other families how they have been here for 4 months, home for 4 days, and then right back in the hospital. I cannot imagine what it must be like for those long-term families when we’ve only been here for 2 weeks. We just can’t wait to walk into the next room to pick up our boy free from wires and tubes instead of driving 20 minutes for tethered snuggling sessions. Thanks for all the words of encouragement – they really help to lift our spirits.
Evan has been moved to “moderate care” and it is actually quite comfortable and less crowded in there. He is struggling with eating, which he never really did before. We think the vent tubes scratched up his mouth and throat and has just made swallowing painful for him. When bottle feeding, he often makes these horrific gagging faces and looks like he is in pain. We’ve asked for some pain meds but it will just take time for the tenderness to go away. In the meantime, he is being tube fed and has been tolerating that well, but he is throwing up more and never did that before. His food is supplemented to make sure he is getting enough calories. His metabolism is faster because his heart has to work harder so he needs the extra calories to make sure he gains weight. Please pray he can take his bottles so we can get rid of his NG tube.
Evan is still in complete heart block. On his own, his ventricles do not get the signal from his atrium and therefore do not beat fast enough. His heartrate should be 140-160 beats/min. Currently, on his own his ventricles pace at 58 beats/min yesterday and 72 beats/min today. That isn’t going to work. The doctors will not let him leave the hospital with complete heart block without getting a pacemaker first. They like to give kids 10-14 days after surgery to give time for swelling and edema to go down. The docs will make their decision Friday or Monday and schedule it for next week. It will probably give us an additional 5ish days in the hospital.
Dr. Hirsch stopped by today to talk to us about it and she actually said that he had his own beat in the OR and it wasn’t until bringing him to the ICU that he developed heart block. So there is hope it can come back. Please pray for this.
Evan continues to poop like a champ but now he has diaper rash. Poor buddy! We now slather a super thick cream on his buns so
hopefully it will go away soon. And daddy fell victim to the first pee spray yesterday. Frankly I’m surprised it has taken this long.
Maybe it is just me because I am new to this or maybe it is a change that happens between 1 and 2 weeks old, but lately when looking at Evan his eyes cross pretty frequently. Maybe his vision is improving and he is trying to focus?? Fellow parents, is this normal?
