We are getting back in the swing of things at home! Alex has been kind of up and down in how he is feeling. We have been trying to increase his feeds back up to his goal rate because his weight has once again fallen off the growth chart. His goal has always been 50 cc/hr. He feels great at 45 cc/hr. In the hospital we had increased to 46 and he was holding his own. The plan was to try and increase him by one cc/wk until we got up to 50. Well yesterday we went up to 47 and immediately he began to feel a difference. He complained last night and again this morning. He also doubled the amount of bile output from his Gtube. So I backed him down to 46.
We ran labs yesterday and they look pretty good. While I am hopeful they are correct a few values don't seem to line up with symptoms I am seeing. So I'm not sure I trust them.
We are still anxiously waiting on results from the liver biopsy. They expected results the next day and it has been a week so I am slightly frustrated.
Alex had a great time on July 4th. He really didn't care much about the fireworks, but his friends and the glowsticks were a huge hit! Whatever, makes you happy, right?
Please pray for results and also for Brucey's job search. He had an interview for the perfect job and is anxiously waiting for an offer!
Thanks for all the love and prayers,