Medical update: things are getting serious

I was talking with Jacob's nurse today and wanted to post this. Just to let everyone know how serious this has become.

The nj tube that he has placed will last about 10-14 days before it plugs. So his next one is due right around Christmas. Apparently Jacob's pyloric sphincter is not formed correctly so what would be a quick 10-15 minute procedure now becomes a 45 minute painful procedure. The site on his stomach looks absolutely horrific. I was around when the nurse changed it today; it had been dry all day and Jacob had been on his stomach for 2 flopping minutes in his crib and it just poured out. I saw it flowing out of his site faster than the nurse and I could get gauze to cover it. The good news is, it's not tube feeding leaking so he is still gaining weight. The bad news is that it is stomach acid leaking. And it is burning his skin off.

The nurse told me today that when Jacob was with the surgeon yesterday, the surgeon threw her hands up in the air and said 'If this doesn't work, I don't know what else we can do. I just don't know, I'm running out of ideas.' The surgeon is apparently going to present this at her meeting for difficult cases to see if anyone has seen anything like this. So far, we have not come across a doctor who has. Jacob cannot be the only one in the world who is having this problem!

There is one option they might try and it's taking the nj tube out and putting a j tube in his jejunum. Then, no food will go anywhere but the intestine. That will allow them to sew up the hole where the g tube was and hope that it stays closed.

You know, when you have people telling you they just don't know anymore and they keep repeating that they don't know, it gets really tough. It's getting really difficult because there is an obvious affect on Jacob. He's tired. It's procedure after procedure, surgery after surgery, and his surgeon is running out of ideas for the first time.