3/31/08

I now weigh 5lbs 6 oz! I am almost back to my birth weight! I vomited early this morning while pooping at the same time. Then I vomited one more time after that, so the doctors stopped my feeds. They ordered an x-ray and everything came back okay. They began continuous feeds again at 10:00 am rounds this morning. I have kept the breast milk down for the day. I am getting 4cc's every hour. They have lowered my TPN because I am getting more breast milk. I pulled the gavage tube out of my nose this afternoon (tube that pushes the breast milk from my nose into my stomach). My mom had to leave the room while they put it back in. She hates to hear me scream while they insert it. I took a nap with my mom this afternoon. I love to snuggle.

My mom, dad, and I want to thank everyone again for your thoughts, prayers, and support. I am growing more each day and getting stronger.

Love, Ben

3/29/08

Happy Saturday. So far I have been able to keep my feedings down. This morning the Doctors even increased them to 2cc per hour. Almost 2 oz per day!!


My parents created a Great Strides CF team for me. If you would like to join Ben's Buddies please follow the directions in the column to the right. My Mom and Dad are doing the Downtown Detroit Riverwalk site and would love for you to join them. Hopefully I will be able to join them too. If you plan on doing the walk select 'JOIN MY TEAM'. As the date approaches we will have a spot for everyone to meet. Also, my Dad is not smart. He screwed up and set my personal goal to $0 and can't figure out how to change it.

Finally, I had a big stinky brown poop at around noon ;)

3/28/08

Yesterday I pooped out the green mucus the nurses had been aspirating from my stomach. It looks as if my intestines might be moving in the right direction. The nurses talked about throwing a pizza party in my honor. Mom and Dad were so excited when they changed my diaper. The doctors may start feedings again today. My Uncle Adam came to visit me all the way from Hawaii yesterday. He showed up in flip flops and shorts. Really silly since we got snow.

Mom and Dad will be here in a bit to see me. I will update everyone later on my day.

Love, Ben

3/27/08

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

3/25/08

I got to eat today!!! I am being fed every six hours. A total of 5 cc's, half breast milk diluted with half sterilized water. Not much, but I sure do love the taste. My binky has been my only source of satisfaction, so I was very excited today. My mom fed me at noon and at 6:00pm today. I have been able to keep the breast milk down. If continue to digest it I will get pure breast milk tomorrow. I had the sweat chloride test done today and the results were a 62. Anything above a 60 means it tested positive for the Cystic Fibrosis. I also had a new IV put in today. This allowed the nurses to draw my blood for the second genetic screening that tests for 97 CF mutations. It should take about a week for the test results. This test should locate the second mutation. My hemoglobin was low this morning, so I also had to have a blood transfusion today.

My mom and I watched a movie this afternoon. I actually slept, but occasionally opened one eye to make sure she was still there. I love to have people around.

:) Ben

3/24/08

Not much new to report. Before my parents can get their screening the Geneticist wants me to undergo another test that will screen for up to 97 CF gene mutations. The original blood test only looked for 30. We're hoping this will detect the other CF causing gene along with the F508.

The Doctors stopped extracting the fluid from my stomach to see if can digest or absorb it on my own. If I can make it 24 hrs without vomiting they will resume attempts at feeding, if you can call it that.....1/10 of an ounce of a water & breast milk mixture every 3 hours.

Also, my Mom's 2 weeks are up so she'll be back on the roads. Watch out!!! She drives a black Saturn Vue and doesn't signal.

Love, Ben

3/22/08

From a medical standpoint, nothing exciting to report today. My Mom and Dad are meeting with a Geneticist on Monday to try and locate the 2 mutated genes that are responsible for my CF. This could help determine the severity and treatment of my disease. Down the road, it may also help my parents give me a brother or sister through in vitro fertilization. The state of Michigan blood test revealed 1 mutated Delta F508 gene. This is the most common mutation found in CF patients. The 2nd was not detected because the state only tests for the 20 - 30 most common of 1500+ possible mutations. This means I am heterozygous CF because I have 2 different mutated genes (each parent passed down a different mutated gene). Had both of my parents passed the same mutated gene I would be considered homozygous.

Thanks to CBSsportsline I was able to watch my first Spartan basketball game with my Dad......except my Dad got mad and started yelling at the computer and turned it off after Idong Ibok couldn't make a layup.

3/21/08

Unfortunately we got some more bad news. My Doctors received my blood test results from the state and it was positive for Cystic Fibrosis. Typically less than half of positive blood tests actually end up being CF. However, with my other symptoms the Doctors are almost certain that I am positive. They will do a sweat test on me when I can get to a weight of 5 lbs - probably next week. My mom and dad are trying to stay positive but also realistic that this will probably confirm what the Doctors already assume. If you would like more information on the disease please go to http://www.cff.org/.



On a good note, my intestines are healing. The barium from yesterdays test has made its way out. Hopefully I'll be eating breast milk by the end of the weekend.

Love,
Ben

3/20/08

Today was a long, busy day. I had 35cc's of Barium injected through my nose this morning, so they could x-ray my abdomen and check on the progress. I have had a total of four x-rays today. My mom and dad should get an update tomorrow morning on the progress. My mom and Kate Witt hung out with me all day. I was pretty calm most of the day and just slept. I did vomit the green bile three times today. Mom gets sad when I do. My hemoglobin was low today so they are also keeping an eye on that. On a good note, I almost got the score of the Michigan State game right.