Bump in the road

I scared my parents last Tuesday. I projectile vomited a few times and Mom didn't know what to do. She decided to take me to the Beaumont ER. They ran a few x-rays and it looked as if I had a partial obstruction in my intestines. There is an area of dilated loop and a visible adhesion. This has probably been there for a while. It seems as if food is slow to move through this area. It is just going to take a while for my body to really heal and smooth out the kinks. I wasn't able to eat for over 24 hours and that was just torture for Mom. She tried to comfort me all night, but I was a hungry boy. I had 7 IV's started until they finally got one in my head to work. That did not make me, Mom or Dad very happy. Mom and Dad were bummed they even decided to take me, but they didn't want to chance anything. Luckily I was discharged the next afternoon. I am back to eating like a champ and trying to gain the 5 ounces I lost in the hospital. I will be weighed tonight to see where I am. My labs came back and all of my numbers are trending in the right direction! My direct bili went from 5.4 to 4.3. My hemoglobin went up to 11.4 from 9.2. My body is finally starting to repair itself! My throat culture came back with normal oral flora so that was great news too. Hopefully the early intervention and preventative treatments for my CF will keep me very healthy and strong.

Smiles, Ben

Poopy Pantalones

I have been pooping too much (average 9 poops a day) so the doctors increased my enzymes to 2 capsules before each feed. Dr. Nasr is in China on vacation so I met with Dr. Lumeng yesterday. I only weighed 7 lbs. 11 oz. at my checkup yesterday. That means on average I have only gained about 11 grams a day since my last visit. I should be gaining about 25-30 grams a day. Hope my dietitian changed 2 of my 7 feeds to all Elecare formula. We will try this for a while in hopes I gain weight at a good rate. If I don't we may possibly have to go on all Elecare for a while. The doctors want me to gain a good amount of weight especially before the winter so I am healthy in order to fight off infections. I am getting about 183 kilocalories/kg per day and the average baby gets about 108 kilocalories/kg per day. I am definitely getting adequate amounts of calories, but with my short gut (malabsorption) and the CF (malabsorption) I am having a hard time holding on to my feeds and absorbing them. My Zantac was changed to Prilosec. Dr. Lumeng said he sees more success with the Prilosec for controlling the acid. This helps with correctly digesting the enzymes. I had blood drawn to check my bilirubin levels and my hemoglobin. I should have the results in the next few days. I also had a throat culture done to make sure I haven't colonized any bacteria. The results for that will be in next week. They will do a throat culture every three months. I am four months now! I love stroller rides. Mom took me on one a few days ago and it didn't last very long because I pooped through my clothes and on my stroller.

Love, Ben

Sleeping in my crib

I slept in my crib for the first time the past two nights. I do so well sleeping in my big boy bed. I sleep for about 5 hours at a time. I wasn't gaining for the past few days so Mom called Dr. Nasr. The dietitian changed my formulation to 1 1/2 teaspoons of Elecare added to my breast milk. I was a hungry boy so I was getting 110 cc's of breast milk and with the increase in liquid and not with an increase in my formula I was only getting 23 k/cal breast milk instead of 24 k/cal. Mom and Dad are now tracking my poops because I seem to be pooping too much again. The doctors don't want me to poop over 6 times a day and I have been. They may need to adjust the enzymes too. I was laughing up a storm this morning. I love to tell stories and I have so much to say.

Giggles, Ben

Growing Growing

I am now 7 lbs 7 oz. My appointment with Dr. Nasr went well. I will go see her in another month to make sure I am behaving. Mom and Dad bought a scale for home so they could check my weight every few days. I have been out and about. I went for a walk with my buddy Jake and Aunt Kate. I went to my Aunt Tera's engagement party. I got to visit my cousins, Josh and Maddie, at their house. I love car rides. Mom took me through the car wash yesterday.

Coos and Smiles, Ben