Liquid Meat

Well my surgery that I last posted about was cancelled. I was very happy about that. When Dr. Brown talked it over with Dr. Tittlebaum they decided to wait until I grow more before they put my broviac in further. The line is out a bit, but they felt it was in far enough for now. My echo will be on hold for now as well. They diluted my TPN solution, so the sugar concentration wouldn't scar my veins. I am still getting the same amount of calories from it, but more volume due to the dilution. Hopefully I will be off of TPN soon and that way we could schedule the surgery for removal! I am not growing as rapidly as I was, but I am still gaining. We had to switch to my Dad's insurance and the home nurse we had is not in our new network. Mom is now drawing my blood every Monday and she takes it to the lab at Beaumont. Thankfully she can draw my blood from my line and doesn't need to poke me! One benefit we get from the broviac. I started to eat pureed meats in hopes that would help me get more calories in. Mom mixes olive oil in with it. I really like the meats and so do my cats. They come and cry while Mom feeds me. I get a kick out of it. Mom and Dad tell me my stool smells of garbage now...very rotten garbage. I also got to try freeze dried apple bits and I like those. The only thing is with my short gut...I don't have much travel time for the apples to digest, so they come out whole. I also am trying a new enzyme, Creon 5, because my bum has a horrible rash we thought we would try and see if it makes any difference. Those little enzymes make my skin burn and bleed. Back to trying 50 different creams...from scripts to over the counter. My vitamin D levels were low again so we increased my ergocalciferol from .125ml to .25ml. My vitamin A and E levels were on the low end of the normal range so we have increased my AquaADEK vitamins from 1ml to 2ml's. I am also decreasing my Zantac and adding in omeprazole. These antacids help keep the acid in my stomach low so the enzymes can do their job. I finally off of TOBI for 28 days...that adds about one hour of free time to my days. I like that! We got a call today from Dr. Nasr and my throat culture from last week is showing that I still have PA...maybe the form of bacteria I have is resistant to the TOBI. I have a bit of a cough again too. The culture is not done growing, so Mom will call Dr. Nasr towards the end of the week and we will come up with a plan of action then. Please pray that my ugly PA bugs go away!

Ahhhhh....da da,

Ben