Old Man

Today is Dad's birthday! He is 33! He is getting old and I am getting big. I weigh 10lbs 8oz. I am actually getting a slight double chin. Mom and Dad are happy to see fat deposits. I am growing well at home. I pulled out my NG tube again last night. I am getting to be a sassy boy sometimes. I go see Dr. Nasr and Dr. Brown this Wednesday. I will continue to have weekly follow up appointments while I am on TPN and tube feeds.

Smiles, Ben

Thanks to the Jack Robb Golf League

This is long overdue but I wanted to thank everyone from my Dad's golf league, especially Joe King, my Great Uncle Tom and Aunt Diane Hudson. They held a 50/50 raffle every week and surprised my Dad with nearly $1500 at the end of the year!! From what I've heard they're pretty bad golfers but they must be great people. I can't tell you how thankful we are to have such wonderful friends and family.

Thanks again,
Ben

Home=Gain

Well I have been home eight days now. I have a home nurse visit me twice a week to take my blood for lab work. She weighs me too. She weighed me the day I came home and I was 9lbs. Four days later she weighed me on the same scale and I was 9lbs 15oz! The day of discharge Mom had a feeling the doctors weren't going to let me go home because I had not gained any consistent weight. Well thankfully Dr. Nasr was on duty that day. She came in on rounds and told us that the intestinal failure team (positive name huh?) wanted me to stay for 5 more days. Dr. Nasr knows Mom all too well and said she told the team that we were going to go home because she didn't want Mom to have a nervous breakdown. Mom was also going to tell them I needed more calories if I was going to gain. The team of doctors had also discussed that in the morning and I went up to 22 k/cal formula. I have hit a plateau for the past few days and have not gained very much. I go up by two cc's in my NG feeds tonight so hopefully that helps a bit. Hopefully I don't have to be on TPN much longer. My labs came back and my liver enzymes have been climbing at a quick rate. I have to go to U of M tomorrow to have an ultrasound done. I was at U of M today for a physical therapy evaluation. They said I am a little behind, but that is expected since I have spent about 4 months of my 6 months of life in the hospital. Plus I am underweight and when I catch up I should be just fine. The CF and intestinal doctors both see me on Wednesday. They will probably be adjusting my calorie intake because I am a bigger boy since they saw me a week ago. A whole pound bigger! Mom and Dad want to thank everyone again for the cards and gifts they still receive in the mail, the meals, the great messages I get on the blog and the thoughtful phone calls. These kind gestures constantly remind us of the great people and support we have pushing us through this tough tough journey life has tossed us.

Kicks and kisses,

Ben

More Meds

Well my throat culture came back and I have cultured Pseudomonas aeruginosa (PA). I will have to take Cipro and Tobramycin (TOBI) to help eradicate it. The TOBI has to be inhaled through the nebulizer twice a day and the Cipro I take twice a day orally. I have to be on these for 1 month. Mom and Dad were sad to get this news today. Thankfully these two antibiotics can be administered at home. The Cipro can cause loose stools so they will wait another day before increasing my feeds. If I begin to get loose stools this should help them in deciding if it is the antibiotics or the increase in food volume that is causing loose stools. Tomorrow Mom and Dad get to practice putting the NG tube down my nose into my stomach. I am not very excited about this. Once it is in it can stay in for 30 days...that is if I don't pull it out which I like to do.

Drool and Bubbles,
Ben

Planning for Home

Well we are working on my feeding plans right now and trying to find the right mix for me to be discharged on. The doctors told me I am going home on a mix of TPN, NG feeds, and oral feeds. They expect me to be hooked up to the TPN for about 16 hours a day. In my NG I am currently getting 24 cc's per hour of formula while I sleep. While I am awake I get to eat 72 cc's every 3 hours. Thankfully my TPN and formula pumps are somewhat small so I don't have to be stuck inside all day. Mom and Dad have a lot of training ahead of them in order to facilitate giving me the TPN and NG feeds at home. We have to be very careful when mixing and administering my TPN because there is a high risk for infection with Broviacs. The doctors have said no matter how cautious we are infection is eventually inevitable. HomeMed will be delivering a lot of supplies to my house for my at home nutrition. I have to have my own fridge for my TPN supplies. I will be taking over the house with my medical supplies. I am just happy I get to eat. I would like more because I give Mom a hard time after I suck down my 72 cc's. I always wonder where the rest of my food is.

~Ben

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