Yesterday they stopped my feedings because the nurses were still pulling a good amount of yellow/green bile from my stomach. The doctors ordered another x-ray. I had a barium enema and I didn't even make a sound. I was so good for the Radiologist. I did pee on the table, but everyone thought it was funny. The barium moved and there seems to be no blockage. The doctors seem to think the bile is backing up into my stomach because my intestines are not fully healed yet. The small intestines move the food down by natural muscle contractions called peristalsis. The doctors think the lack of peristalsis is what is causing the back up. They did resume feedings last night through the tube in my nose. I am getting one cc every hour. The doctor's told Mom and Dad it is realistic that I will be in the hospital for another 6 weeks. This was difficult news, but they are trying to be positive and hope it happens much sooner.
Mom and Dad are in contact with Dr. Nasr from U of M. Cameron's mom Debi has e-mailed my Dad and put him in touch with Dr. Nasr. She is a well renowned doctor who treats CF. Mom and Dad want to make sure I start getting treated for my CF as soon as possible. My mom is on her way up to see me so she will get this mornings update.
Love, Ben
15 comments:
Hi Ben, Uncle Norman here. I'm sad you have to stay in the hospital longer, but they have to get you better before you can go home. I'll be in to see you in 8 days and I can't wait, that will be Saturday April 5th so don't forget to look for me. Tell your mom and dad I asked about them and that you are all in my prayers.......
Love you,
Uncle Norman
O and tell Grandma & Grandpa, Great Grandma, Aunt Nicole, Uncle Toad opps Todd, Little Maddie and Josh. I love them all too.
To our little Ben "jammin"
Sorry to hear about the news of your extended stay, litle man, but know we are thinking of you and you are in our prayers. Keep on keepin and go Spartans
Love Great Aunt Claire and Uncle Gord
Hi Ben,
I heard you were meeting Dr. Nasr soon. You will love her...she is so great! She keeps me so healthy and I get a ton of stickers when I go for a visit. I am a Spartan as well, and I told her as much. One day she asked me if I was going to go to Michigan and I told her "no I have to go to Michigan State, my uncle Tim said so". She thought it was very funny! My sister and I said a prayer for you last night. We know you will get better soon. Tell your mom and dad we are all thinking of them. My mom knows just how tired they are, but soon they will be tired for other reasons! Just because you are up feeding every couple hours...it's best to train them early!:) Sometimes I wake my mom up just to tell her I love her...that doesn't always go over well at 3 AM!
Get better soon!
Your friend, Cameron
Hello, I wanted to just write a quick note to let you all know that we are thinking about you and wishing you all our luck and love. Hang in there!!!! He's soooo cute. What a bundle of love you have. Hugs and Kisses. Annette, Bill, Kara and Owen
Hey Peanut Butter!
Just wanted to say Hi and I can't wait to get down there again, really soon! I know your probably having a lot of fun right now because Uncle Adam is there as I am typing this! Your a boy so he probably doesn't scare you like he scares your cousin Emma! Love you lots! Auntie Annie
Hey Little Man,
We are amazed at your strength and courage. You are so brave. You have endured more than most people will in a lifetime in your first few weeks of life. We are so proud of your Mommy and Daddy for staying positive when it is not always easy to do so. They are going to fight for the best treatment possible for you. We are praying for you every day and Joshua has already started making posters for your homecoming party. It would be nice if you could be home by the time the Spartans play in the Final Four.
All our love,
Uncle Todd, Aunt Nicole,Josh, and Maddie
Hi Sugar Plum,
How is it going, Ben? I’m really going to show my toys to you when you get out from the hospital. (Aunt Nicole can’t wait to send those toys home with you!) I can’t wait until you can come over. I really miss you.
Love,
Joshua
i think i am going to come visit more often. each time i have visited ben was on a good day- the first time he had just had his first BM and chris was practically skipping down the hallways. the second time was tuesday when he was guzzling breast milk like there was no tomorrow (well, he had kept it down at least).
go, ben, go!
Hey Ben,
I'm sad that you have to stay a little longer, but you are very strong and your parents are going to help you through all of this. You are the light of their life, so keep on being good for the doctors and they will get you better so you can go home. It sounds like you have a lot of visitors this weekend, so enjoy everyone and smile for them (they'll melt and you'll have 'em all right where you want 'em). Stay strong little buddy!
:)
Go Spartans!
love,
shell
Hey Little Ben,
You are an amazing little guy. You are so strong and very loved. Please tell your mom and dad that you are ALL in our prayers daily. I can't wait to meet you.
Love,
Cat (your mom's friend from work)
Howdy Ben-
We just heard about your arrival from your Aunt Nicole. We can't wait to meet you this Fall at a MSU tailgate if not sooner. By then you'll be used to your Dad being upset at the TV. You may not understand why he acts that way, but someday you will. You get used to it believe you me. Keep up the good work! You're in our thoughts and prayers. Go green!
Jacque & Chris
Hi Ben! It was so great to finally see you today! You are even cuter in person than you are in the pictures. We had a nice visit with your Mommy and Daddy while you watched from your cozy bed. You sure seem to love that pacifier of yours. Stay strong!
Kari and Brian Stecker
Baby steps Ben (no pun intended). Remember, a journey of a thousand miles begins with a single step. Keep taking those steps and you will be home soon. You have a lot of people supporting you. Lean on them.
I look forward to your first hockey weekend (your Dad will explain when you are old enough).
Take care,
Temple (one of your Dad's MSU buddies)
P.S, if you are really good today, maybe your Dad will let you stay up and watch the game tonight.
Hi Benjamin.
Marcie and I visited last night with Kari and Brian. It was great to finally see you. I think you look so much like your daddy. If you wore a baby blue Yankees you'd look like his twin when he was younger. You opened your eyes to watch us while we were talking. I think you were mainly looking at Brian's hair, but who doesn't!!
Take Care,
Andy
Hi Benjamin,
You hang in there buddy. You have a ton of people praying for you and your family. Tell your mom and dad we love them and will help with what ever I can.
Can't wait to meet you!
Love, Kim
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