Well we are working on my feeding plans right now and trying to find the right mix for me to be discharged on. The doctors told me I am going home on a mix of TPN, NG feeds, and oral feeds. They expect me to be hooked up to the TPN for about 16 hours a day. In my NG I am currently getting 24 cc's per hour of formula while I sleep. While I am awake I get to eat 72 cc's every 3 hours. Thankfully my TPN and formula pumps are somewhat small so I don't have to be stuck inside all day. Mom and Dad have a lot of training ahead of them in order to facilitate giving me the TPN and NG feeds at home. We have to be very careful when mixing and administering my TPN because there is a high risk for infection with Broviacs. The doctors have said no matter how cautious we are infection is eventually inevitable. HomeMed will be delivering a lot of supplies to my house for my at home nutrition. I have to have my own fridge for my TPN supplies. I will be taking over the house with my medical supplies. I am just happy I get to eat. I would like more because I give Mom a hard time after I suck down my 72 cc's. I always wonder where the rest of my food is.
~Ben
5 comments:
Benjamin,
I am so glad to hear you will be going home soon. Stay strong and be good for mommy and daddy. I love you. Great Aunt Jane
Hello Ben,
We are all glad to hear you are eating again. Matt says hello! Maybe next time he's here, we can come over. Happy Birthday to mom and many more! Take care and eat well.
Love Uncle Rich, Aunt Margo and the Kids
So happy to hear you'll be coming home... be good, and eat, eat, eat! =) We have to come see you guys soon, it's been too long.
Love, Carrie & Brian
Dear Benjamin,
We are happy to hear you'll be going home soon.
This is for your mom and dad--- Don't be frightened about the medical supplies. About ten years ago, I had a port and was on TPN for 6 weeks after being hospitalized with ulcerative colitis. When they gave me discharge instructions, I was pretty much out of it-- so Uncle Mike was in charge of everything. With two of you to stay on top of the requirements, you will do fine. Just remember to follow all of the rules to keep everything sterile.
~~One more thing to add to your medical resumes!
Love you all,
Aunt Kathy
Hey Ben, it's Aunt Carin here!
Hope things are going as smooth as possible. I'm over Suzanne's right now and she was asking about you, sends her best.
That's pretty cool that you get to take over the house with all your stuff. I bet the cats are SO mad at you...don't take it personally, cats always think that THEY should rule the roost (but you know that you're the big man on campus)!
I hope you get more than 72 cc real soon so you can work on putting those chubby rolls back into your knees!
Big hugs & kisses to you, mom & dad. Five weeks and counting until I can see...YAY!
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