Hello everyone! My name is Ben and I was born March 10, 2008. I have Cystic Fibrosis and Short Gut. This is all about me and my determination to find a cure for Cystic Fibrosis. I was born with a blockage in my small intestine. This caused a large part of the intestine to twist. When I was 12 hours old I underwent surgery to remove the bad parts. I have about 40-50cm of good intestine remaining plus a healthy ileocecal valve. On March 22, 2008 I was diagnosed with Cystic Fibrosis.
Monday, February 9, 2009
Crawling Man
Well I haven't posted in a while and a lot has happened, so I will try to give you all a quick re-cap of the last month. I am about 18 1/2 pounds and 28 1/2 inches. I am getting big and can't believe I will be 11 months tomorrow. I had a few trips to the ER last weekend. On Friday the 30th I had an appointment with Dr. Nasr and that went well. Later that night when mom was getting ready to change my broviac dressing she noticed I had a small tear in the outer opening of my broviac. She called the on-call peds GI doc and they said it would be best to take me in to have it checked out because of the risk of infection. We knew the line was obviously weak because of the outer tear so we did not want it to open all the way. We got the the ER at about 8pm on Friday and then we had to be there until 4am. The peds surgeon on call was in a major surgery so we had to wait for him. It took them about 10 minutes to "repair" my line. Sunday night came along and Mom was getting ready to head out to some friends for the super bowl when Dad yelled for her help. I was crawling around on the floor and my line had come apart and I had blood all over. It would spew even faster out of my line because I was crying. Mom quickly washed her hands and tied a knot in my line. This stopped the blood flow. We quickly packed up to make another trip back to the ER. This time Mom talked to the peds GI on call and told them she and Dad wanted the darn thing out. Mom and Dad couldn't help but think...what if my line had come apart while I was sleeping and I bled to death. The risks are outweighing the benefits at this point in the game. Well because it was Sunday they would not take it out because it requires surgery to remove (not considered urgent) and Dr. Brown feels I still need it (more on that later). They did another "repair" and this time it seemed better. I am a mobile man and this makes it all the more riskier since I spend a lot of time on my belly. Also I am hooked up to my IV machine for 16 hours so Mom has to follow me around holding onto the machine and bag of fluid. She said this is silly and something needs to change.
My creatinine levels in my blood were high, so that can mean I am dehydrated. This is why Dr. Brown feels I still need fluids. We are not sure why all of a sudden I have there elevated levels. Because of this Mom draws my blood on Monday along with taking a sample of my urine to the lab. This allows them to do comparative ratios and keep an eye on my levels. The levels that they look at could affect my kidneys if they are high so that is why they don't want to take a risks and want me pumped full of IV fluids. I drink my formula, but the doctors said I must need extra right now because of my conditions. I see Dr. Brown this Wednesday, so hopefully Mom can discuss things further and we can come to a compromise on my care.
I saw an allergist on Monday Feb 2nd. I have had a few reactions to milk products to include butter and yogurt. I vomited on the yogurt and broke out in rashes around my face from both. Right now I have to stay away from products containing milk...that rules out a lot of things. I can't even have Goldfish crackers! I am still too young to get a reliable allergy test. The doctor said we can get blood now to run a few tests, but there are high chances for false negatives. We can do the needle tests when I am bigger. There is also the possibility that I could grow out of it which would be great. Dr. McMorris was who I saw and I really liked him. Mom had asked him if I could have more severe allergies to food because of my short gut since we don't have any history of food allergies in the family. He said it is probably more likely due to my stomach acids being altered from the Zantac and Zegrid I am on. There are always the goods and bads to all medical intervention. I have been on Zantac basically since birth. They put in in my TPN from the time I was born. I am still on it to help make my stomach neutral so the pancreatic enzymes can work better.
I also met with a Nephrologist (kidney doctor) on Friday Feb 6th. They agreed at this point that I needed more fluids based on my lad work. Mom was hoping they might have had something else to add to the reasons why or more of an explanation, but she didn't get what she wanted.
After my five visits to U of M this past week it was nice to take a break from that Maize and Blue place for a weekend. I have a peds well checkup tomorrow to get my Synagis vaccine and then off to Dr. Browns for full day at U of M again. I have yet to not spend over 4 hours there for one appointment. Pack your lunch and put on your crazy hat for that place.
Well life is good overall. I can't wait to see this white stuff melt and the green grow. Mom says the spring is a beautiful time of year and she is ready to put me in a jogging a stroller so we can both get out of hibernation.
Ben
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8 comments:
Hey Big Boy!
It was so awesome to see you yesterday! Grandma Carol had you sleeping on her, and she was very nice to let me take you away from her so I could hold you and let you sleep on me! You were pretty annoyed because I kept waking you up, with all the talking and touching your curly Q hair! Which by the way is the cuttest thing ever! I can't believe how chunky you are! I love you so much and it was so nice to sit and talk with my sister and brother in law. I love all of you! Can't wait to see you soon! I think we are going to meet up for dinner sometime soon! Which Emma would just love! Love, Auntie Annie!
Hi Beautiful,
Your new video is the best; we've watched it over and over. You sure do move quickly on the wood floor -- watch out kitty cats! We enjoyed our visit yesterday, seeing you and mommy and daddy, and Auntie Annie. You are such a sweetheart; we love you and mommy and daddy so much - God Bless you all too, Grandma Carol and Papa Phil
Benjamin,
Happy Valentine's Day!!!!! Hope all is going well. I love your videos Ben, you are so darn cute. Tell your mommy and daddy I love them and when Sara and I get back from Florida I will come and visit you. Hugs and Kisses Great Aunt Jane XOXOXO
Hello Benjamin,
We continue to enjoy watching your progress. Big thank-you to your Mommy & Daddy, because we often feel like we are right there watching you get stronger and stronger. You are a very handsome little guy!
Love,
Aunt Kathy & Uncle Mike
Thanks for the update,your adorable. You are always in our thoughts.Wishing the best of everything to you all!! Love, Mark, Irene, Jeremy, and Emily
Hey Ben,
Good to hear you are getting bigger and doing good. My mom really enjoyed talking to your mom the other day. I heard my mom tell my dad the story about how your line started bleeding and your parents got a little panicked! I thought that sounded cool, so I decided to see if I could do the same to my mom and dad and jumped off a chair and collided into the wall....you are right they do panic when they see blood!! I ended up in the ER and had to get 3 staples in my head! Trust me, everyone in the ER knew I was not impressed by the staples! As soon as I got home though I was right back to jumping around and my mom kept telling me to stop! I didn't of course!!
I go see Dr. Nasr tomorrow to find out why I can't ever breathe out of my nose....more doctor visits!! ARGH!! I know you have a lot too....one day my friend, this will all be a thing of the past!!
Take care of your self and keep growing....
Your friend, Cameron Hain
Hey Ben!
You are getting so big and looking more and more like your daddy! Speaking of your Daddy have him email me or call me (keziemer@svsu.edu) Im planning on putting together a fundraiser event at my office for your team for the walk. c:
Cant wait to see you!
Love,
Kaitlyn
ben - you are getting so big and you are such a beautiful boy! it's so exciting to hear how mobile you've become...although you have to be extra careful with the tube...no more scares like that for your mom and dad! keep up all the good work...i can't believe you are almost one...someone has a birthdya coming up!
lots of love to you and your mom and your dad -- meghan
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