Long days and nights

We finally got home from the hospital on July 4, what a way to celebrate the birth of America. Zach got sent home, not that he is really any better but they are just ok with seeing how he does for a week on feeds. It was an interesting 3 weeks at the hospital this time. He had lots of tests done, another blood infection, had to have his central line pulled again :(

They started him back on feeds through his J tube, in hopes that he can now tolerate some formula. They slowly went up on feeds til they got him at 48 ml/hr going into his tube. He has to be hooked for 24 hours a day to get enough calories to maintain his weight. Unfortunatly, on the feeds he throws up...every night and for the most part at least once every day. He walks around most of the day crying that his "bel wee" (belly) hurts, which is very pittiful from a child that loves to run and play. His quality of life at this point is far from where we would like it to be.
At night, I let him fall asleep next to me on the couch and leave him with me til I go to bed and then put him right beside me. I am afraid to put him by himself because I know he is going to throw up, we just wait for it to happen and I don't want him to be alone. During the day, you never know when it is going to happen...he will just stop what he is doing and get really quiet.

He is on several meds now and has to have daily weight checks by his home nurse. So far he has not lost any weight, even with all of his throwing up. He has appointments next week to see his GI doctor again and to meet with the nutritionist about the amount of calories he is getting. I am not we are going to do anymore testing right now on Zach since the last tests haven't really turned up anything and haven't helped. They believe he has a disorder called Autonomical Dysfunction...which is where your central nervous system is malfunctioning. It can affect all of your involuntary muscles and it actually explains and ties together most of his symptoms. There is no cure, you can only treat the symptoms that you have. He is on gabapentin right now...which is a seizure medicine but it also helps with nerve pain which is what they are using it for.

We know that Zach will have good days and bad days and we will figure out what triggers some of his symptoms. It is just hard trying to plan anything or trying to give him a normal childhood when you never know what tomorrow brings. We are living one day at a time and are learning to treasure the good days or atleast the better days.