Back to the Hospital

Tyson is back in the hospital.

He’s really struggling.

They’re inserting a feeding tube in hopes of pushing more calories into him so he gains weight. Gaining weight is crucial. He has to gain weight and get stronger for a heart operation scheduled at around six months. If he does not gain weight, he faces a heart operation now just to get him to a point where his heart doesn’t work so hard, thereby making it easier to eat and allowing him to gain weight and get stronger for that second operation.

He’ll spend a few days in the hospital on the feeding tube and IV medicine. They will teach us how to work with the tube, which will be in him 24/7. If he gains weight in the next few days,  they’ll let him come home and we will be responsible for feeding and administering the tube should it become dislodged.

He’ll likely have the tube in until his operation – whether the first one becomes necessary or we make it to the second one.

If he does not gain weight in the next few days, he’ll probably go straight to the operation.

Heart Heart-breaking.

We had such high hopes when we were able to bring him home early – we felt like he was going to breeze through this battle. Far from it.  

He had a healthy appetite when he first came home, but he has gone downhill since then. We’ve determined he has acid reflux, which is leading to colic. This results in what seems like perpetual pain, especially between the hours of 9 p.m. and midnight. By the end of the day, you can literally hear the reflux starting in his stomach and making its way northward.

This is not uncommon in babies, but it is more common and more severe in babies with heart defects.

This poor boy’s life has been really, really tough so far. From needles and monitors in the NICU to constant stomach pain at home; he has had nothing but challenges. And the worst is yet to come.

I’m starting to lose my cool and get depressed all at the same time. The kid doesn’t deserve this bullshit.

I feel guilty because I sometimes get angry. He requires much attention and work. He constantly needs held and repeatedly repositioned because he can’t stay comfortable in one spot very long. He moves very similarly to a worm on a fish hook, desperately trying to find a spot where he can be comfortable. He cries and grunts throughout the day.

I don’t know if it is anger. Maybe it is just frustration. Or exhaustion. But my shortness with him is not right. He can’t help it.

He’s up into the night because being on his back is painful. They tell you when your child has reflux, keep them as upright as possible. My wife has taken to sleeping with him lying on her belly because that is more comfortable for him.

She’s a saint. Up with him all night and then dealing with Tyson and rambunctious Sydney all day.  Without a doubt, I hit the wife lottery and Sydney and Tyson hit the mom lottery.

Unfortunately, her love can’t work magic. The next few days are crucial. As repulsive to me as it is to have my son living with a feeding tube, I DO NOT want that surgery.

I’ll keep you updated when we know more.