It is amazing, when dealing with problems of the intestine, how often we have prayed for bowel movements. We are ecstatic to announce that Patrick’s gut woke up yesterday afternoon. It seems that things are working very well so far. Patrick’s immediate reaction was to ask me if it meant he could have a bowl of soup. After a nap (giving us time to call the nurse practitioner for approval) we consented.
Life is easier with Patrick able to eat. He was really heartbroken without food so we were eating out in the hall. Now, as long as he has his bowl of soup first so his belly isn’t empty, Patrick is content letting us eat in front of him.
The plan moving forward is this. Today, they took the drain tube off of his g-tube (stomach) to see if he could make it the day without feeling sick. They also allowed him clear liquids all day. We are lucky Patrick is loving chicken broth. Tomorrow, they’ll restart his tube feeds and start weaning him back off of TPN.
It’s been a month since his lungs needed drained because of his formula, so it’s time to try the other formula, elecare, again. He needs more balanced nutrition. This could mean he needs to go slower starting feeds so that we are being really careful about not repeating that performance again. I’d guess we still have a few days here.
Sadly, though, that means that Brian will be leaving us in the hospital again. He flies home on Monday morning. I can’t believe that much time has passed. But at least he’s leaving us with things moving forward.
Today’s been a quiet day. Patrick has been kind of grumpy and contrary feeling all day. I’m not sure exactly why. I suspect it is that we have tried to go light on his pain medicine. He’s only getting tylenol right now. The other medicine controls pain well, but also slows down the gut. Patrick’s also been quite tired. Hopefully we can succeed in getting him a good night’s sleep tonight. He’s been kind of restless and jumpy and sleeps so glued to me that I can’t move all night.
Patrick Hoopes 