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

Bundle of new "firsts"

Well I have experienced quite a bit these last few weeks. I got a bunch of gifts from that goofy guy I saw at the mall. I guess he isn't so scary after all. Mom and Dad made me dress up in a few outfits for Christmas like I was in a photo shoot.

I had my first power outage from Sunday morning until Tuesday afternoon. Dad had to go buy a generator because we had to keep all of my medications cold in my med fridge. I also had to be able to do my breathing treatments so we needed electricity to power my compressor. We have to sterilize my nebulizers after each use so we used these Medela micro steam bags in the microwave and had one lamp hooked up for light at night. I didn't know much of a difference, but Mom and Dad said this is how people used to live (minus our bit of power from the generator). Thankfully we had our gas fireplace to keep us warm. I loved seeing all of the candles and flashlights. We even made shadows puppets on the wall.

I was up late for my first New Years Eve to watch the ball drop. I was eating my ba ba while I watched TV and then Mom planted a big smooch on my cheek at midnight. I was whisked right back to bed after the festivities.

Well it is now 2009 and I have a lot more "firsts" look forward to. I will be turning one this year. I can't wait to actually be outside this spring and summer.

I also have some appointments this next week at U of M that I am not looking forward to. I have surgery scheduled on Jan 6th to have my broviac inserted back in to the original spot. It has come out over time. I probably haven't helped it since I like to grab at it any chance I get. Plus I have grown and with my chest cavity expanding that may have pushed it out a bit too. When I am in the recovery room from that surgery they will be performing an echo cardiogram on me. I had a visit with my cardiologist on Dec 22nd and they could still hear the heart murmur that I had when I was born. I have a small Ventricular Septal Defect (VSD) which is basically a hole in my heart. The echo will let the doctors know how big the hole actually is. The pictures will determine if I need surgery or if it will heal over time. I also have my monthly checkup with Dr. Nasr on Jan 7th. I think I have been behaving so she should be happy.

Wishing you a healthy, happy new year!

Ben