No Improvement

Jimmie has not eaten much to speak of today by mouth. He's been puking after every meal. Rachael is VERY discouraged. She feels like nothing they are doing is working and that they could be struggling like this at home. She talked to the Dr. about leaving tomorrow. She would learn how to use the pump and Jimmie would go home with the tube. They may end up leaving. However if someone on the medical staff has any ideas to do something different for Jimmie Rachael may decide to stay.

We are interested to try oxygen, enzymes, go back to mostly breast milk or try an amino based formula in case he has allergies. If the hospital is willing to experiment with these things . . . they may stay.

The continuous feed at night is making Jimmie miserable. Rachael feels it never gives his tummy a break. The Dr. feels perhaps he should be tolerating it better and suggested that Jimmie drink a radio active isotope so they could do a lower GI to see if Jimmie has a problem with his peristalsis (the way his food moves out of his stomach and through his lower bowel). If he did have slow or weak peristalsis they would do more Erythromycin. That's not a good option. They actually took him off of that today because they are very suspicious that it is causing him a lot of tummy pain. The other thing they would do was Reglan which now comes with a HUGE warning about how it can cause neurological damage. So that drug is not an option to us. So Rachael refused the test because even if it did show some small problems she wouldn't use either drug for it.

She asked the Dr. to talk her into it if they felt it was really necessary. The Dr. said she understood Rachael's reasoning and she would let that test go for now.

So I don't know if they will stay at the hospital or go. I don't know where they will go from here with his treatment.

Please keep praying. Rachael is so exhausted she can hardly think straight. I am feeling really really badly for Justin, Rachael and Jimmie right now.

Love,
Amber