5/30/08

I got to start feeds yesterday. I get 5 cc's every 3 hours of full strength breast milk. I will finish my antibiotics on Monday. I am still on the full amount of TPN and the breast milk is added calories. I am supposed to move to the Pediatric ICU today. Mom and Dad were very upset the other night because the baby next to me tested positive for MRSA and that made them very uneasy. Mom talked to the doctors and told them about her concerns and the baby was eventually moved last night. I need to try and stay as healthy as possible while I am trying to grow.

~Ben

5/27/08

I am still on TPN for my nutrition. I have 6 days left of antibiotics and then hopefully they will start to slowly feed me. Mom gives me a little bit of breast milk each time she pumps and I like that. I have a suction tube in my nose that goes into my stomach still so I don't digest the 1cc she gives me. I do like the taste though. Tomorrow they will draw blood to send to the Mayo Clinic for my full genetic screen. This test should find the other CF gene. Mom met Cameron today. She said he is a cute little boy and he has a lot of energy. When a cure is found I hope to meet Cameron too.

~Ben

5/24/08

I have settled in at the U of M NICU. It is physically quite the change from Beaumont. Mom and Dad say we went from the Four Seasons to Motel 6. I have babies about 3 feet from each side of me. There are about 14 babies crammed in this small room. I have a big boy bed. Mom said she may climb in it and take a nap with me...lol. The doctors and nurses have been great though. I finally got to meet Dr. Nasr. I am still not eating and I am on full TPN. They will try and start feeds in the next 10-14 days. I am still on my antibiotics to treat the Necrotizing Enterocolitis (NEC). I also got another PICC Line in my arm and I have a suction tube back in my nose to help keep the air out of my stomach. Dr. Nasr ordered me to start my Albuterol inhalants today. I will get them twice a day. She said my lungs sound good, but this is all preventative treatment. Dr. Nasr said my biggest problem right now is gaining weight and I have to put meat on my bones. The harder it is for me to gain the more susceptible it makes my immune system.

Love, Ben

5/20/08

Sunday night I projectile vomited and Mom new something wasn't right. She called the nurse over and told her she was scared. I seemed very lethargic too. The doctors stopped my feeds and put me back on TPN. I had x-rays done right away and they thought there was free air present in my abdomen again. They decided there was air in my bowel wall again and not inside my abdomen. Both situations are not good, but if it were in my abdomen they would have had to performed emergency surgery again. They believe I have an area in my intestine where bacteria grows and produces gas that somehow moves into my intestinal wall where it should not be. Like a pond that is stagnant and grows bacteria. I am on three antibiotics and I have an IV in my head again. They will just monitor me and try to clear the infection. Mom and Dad are sick to their stomachs. It is hard for them to see me like this again. I can not eat and that upsets me and my parents. They feel helpless. I might be moved to U of M sometime this week.

Ben

5/18/08

I have been put on a predigested formula, Nutramigen, to hopefully try and help me gain weight. I get to breast feed a few times a day in between feedings to give me some extra calories. Mom was sad we had to try this, but it was better than putting me on TPN. TPN would be a quick fix and it only has negative effects on my liver. My bilirubin is 4.4, the highest it has been. The doctors want to get my stool, feedings, and bicarb normal before they start treating my bili. I am still having some loose liquid stools and now that I am getting this formula I have vomited three times. I don't burp as well now that I have started this formula. The doctors are doing an ultrasound tomorrow on my stomach to rule out vomiting caused from Pyloric Stenosis. This is the enlargement of the valve connecting the stomach and small intestine. Mom and Dad hope this is not the case because I would need another surgery. I will be 11 weeks old tomorrow.

~Ben

Change in Plans

The doctors do not want to send me home because my stools are loose and basically absorbing into my diaper and I am not gaining weight. My bicarb levels came back at 14 which is low. The doctors are concerned with dehydration. We have stopped the enzymes and I am just eating breast milk. The doctors have lowered my food intake a bit because there could be a concern that I am "dumping". I will be closely monitored the next few days and if my stools do not change and I do not gain we will have to look at other ways of adding calories. My mom told the doctors she does not want me back on TPN and that is the last option.

~Ben

5/14/08

I am now eating as much as I want about every three hours. I had two bottles of breast milk yesterday that each had 120 cc's (4 oz.)! I was hungry in the morning. I also get to breast feed so mom feeds me during the day. I am now getting my enzymes before each meal. Back to eating applesauce. The doctors have talked about me going home tomorrow! I can't wait to finally go for a stroller ride.

Love, Ben

5/12/08

I am currently on 38 cc's of breast milk every two hours. I am off of TPN since last night. Now I am just trying to talk the doctors into giving me more food. The little 3lb 9 oz. girl next to me gets more per feed than me! The doctors are doing rounds as we speak so hopefully they will be over soon. I am now in the big shared pod again. They had to move me yesterday because a 31 week old baby needed my room. This is hopefully a sign I should be going home again soon.

Later, Ben

5/10/08

I am already eating 30 cc's (one ounce) of full strength breast milk every two hours. That means I get a total of 12 ounces per day. I am still on TPN and I am currently getting 18 cc's per hour through my IV. The doctors have been giving me more than I ever had because I had only been losing weight. I gained about an ounce a day when I was home. The day of surgery I was 6 pounds 8 oz. After surgery and days at the hospital I was down to 5 pounds 15 oz. I am now 6 pounds 5 oz. I am doing very well with my feeds. I will eventually go back on my enzymes once I get to full feeds. I hope to be out enjoying the sunshine soon.

Mom, Dad, and I want to thank everyone for their support at the CF walk yesterday. We are overwhelmed by the love and support all of you have shown us. Mom was happy to see so many friends and family there yesterday. It makes Mom tear up. If we can continue this each an every year we will only get closer and closer to finding a cure.

Smiles, Ben

5/7/08

I get to eat today! I will get half strength breast milk (breast milk diluted with sterilized water). The doctors still haven't decided on an amount, but they will be on rounds soon and they will have made a decision. Yesterday they said 1/2 ounce to a full ounce for the first feed. I get to start off with a bottle and bypass the yucky gavage tube. I am no longer on antibiotics. My blood cultures for sepsis have come back negative so that was great news. If my feedings go well hopefully I will be going home in the next two or three weeks.

Love, Ben

5/5/08

I no longer have the tube going into my mouth down into my stomach. I am only hooked to the monitor and I have an IV for my TPN. I am losing weight so hopefully they will start feeding me soon. The doctors said 7-10 days since surgery. Tomorrow will be 7 days. I am a very angry boy since I can not eat. My pacifier only satisfies me for so long. It is all about patience and waiting for now.

Ben

5/2/08

After a few bouts of projectile vomitting and the pediatrician checking my stool for blood I was rushed to the ER on Tuesday. I had x-rays done and air was found in my bowel walls. This required me to have emergency surgery. The air being present signalled to the doctors that I probably had a perforation. They could not find one. It could have been so small or already healed over. He smoothed out some intestinal kinks and cut open a part to sew it in order to make that portion of my bowel wider. I made it out of surgery. I was taken off the ventilator yesterday. I am still on Fentanyl for pain. Infection was present in my intestines, so I am on three antibiotics for about two weeks. There is major concern for sepsis in the blood, but so far my cultures have come back negative. Mom finally got to hold me last night. It helped to calm me a bit. I have not been sleeping much. I am very mad I can not eat. I am back on TPN for nutrition, but I want some real food. I have more tubes connected to me now than I ever did. I have the suction tube back in my mouth to keep all fluids from entering my intestines. This allows them to rest and heal. Mom and Dad are very sad to see me go through this again. The doctors said these types of things can just happen because the amount of intestine I have remaining is floppy.

Ben