September 8th

Everybody wish my Mom a Happy Birthday. She's getting old so make her feel better.

:)

Misbehaving

Well I decided I did not want Mom to go on her trip to San Francisco. When Miss Tera came to baby sit me Thursday morning I had an unusual stool and Mom thought there might be blood present. She took my diaper to the pediatrician and it came up positive for blood in my stool. Mom and Miss Tera drove me straight to U of M Hospital to the ER. I had an NG tube put down my nose to help relieve some of the gas in my intestines. The x-rays didn't show much. They took my blood and did a bunch of tests and nothing came back positive for anything. Mom mentioned C-diff to the doctors and they said I wasn't presenting the "typical" symptoms. It is a simple test where they collect my stool and put it in a vial and send it to the lab for testing. Well after making me NPO (no feeds) for 6 days and putting me into surgery for a Broviac (google it) the doctors still did not have any idea of what was causing my bloody stools. GI recommended that they test me for C-diff and when I finally had a poop yesterday they collected my stool and send it to be tested for C-diff. Well today the test came back positive. Mom and Dad were very upset that we could have tested for this the first day I was admitted to the hospital. I have gone 6 days with out eating and I have lost 1 whole pound! I was almost 10 pounds when I was admitted and now I am about 8 lbs 14 oz. It has been a torturous 6 days for me and it has made mom cry. I love to eat and the TPN I am on is not taking the hunger away. Due to my history of NEC they began treating me Thursday night with the 3 antibiotics I was on before. Right now there is some inconsistency with the 3 teams that are treating me. Mom will discuss things further with them tomorrow and voice her opinion some more. I think there are too many cooks in the kitchen right now and Mom may request to just be in contact with my primary team, Dr. Nasr.

Where is the milk man?

~Ben

Great Appointment!

I went to see Dr. Nasr and Dr. Lumeng at U of M yesterday for my monthly checkup. It was a very busy office. They were seeing 45 patients yesterday and 14 of whom had CF. My weight was 9.03 lbs. My dietitian was very happy with my weight gain. She told mom she knew the Elecare formula was what I really needed more of and was glad Mom had made the transition. She said with all of the trauma and massive bowel resection I had that the elemental formula was best for me. Mom and Dad know this is a God send when it comes to me gaining weight. Thankfully after the many discussions with insurance it seems my formula is being covered. It is $55 a can! I will be going through about 12 cans a month. Who said babies were cheap :) It has to be sent to the house from a medical supplier since you can't buy it off the shelf at the grocery store. They did another throat culture since I seemed to be coughing a little bit more. Hopefully it will come back with just normal oral flora. I was referred to physical therapy to help me work on my strength. Since I have some weight catching up to do this will just help to make sure I am on track with my physical development. After my long morning and afternoon trek to U of M, I went to the Detroit Zoo last night. I met my buddies, Jake, Nick, Ryan and Josh there. I slept through most of the excursion. It was a nice cool night for a stroll.

Life is good.

Ben

Chatty Cathy

I am such a talkative boy. I sometimes would rather talk than eat my bottle. I have been getting more formula feeds because I seem to put on the weight faster. I was 8 lbs 8 oz. last night! I slept for eight hours last night! The only bad thing about that was when I was weighed this morning I was 7 lbs 15 oz, after dad changed my extremely full diaper. Mom and Dad may need to wake me up in the middle of the night to feed me once. My weight is so sensitive. Mom is currently starting to wean herself from breast pumping. She is trying to do it twice a day since I have started to eat more formula. We have a deep freezer full, so we should have enough breast milk to last me at least 3 more months. Mom is sad about making this transition, but knows we have to do what works best at this point. I will still get some breast milk everyday, so hopefully the immunities will help keep me healthy as I grow bigger. I got to meet my Great Uncle Gord and Aunt Claire. They had their baby shower last Sunday. My Cousin Emma held me too. She even took one of my pacifiers for herself. I didn't mind though. I love to suck on my two middle fingers more. I was over stimulated that day with all of the new faces.


Love, Ben

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