Crawling Man

Well I haven't posted in a while and a lot has happened, so I will try to give you all a quick re-cap of the last month. I am about 18 1/2 pounds and 28 1/2 inches. I am getting big and can't believe I will be 11 months tomorrow. I had a few trips to the ER last weekend. On Friday the 30th I had an appointment with Dr. Nasr and that went well. Later that night when mom was getting ready to change my broviac dressing she noticed I had a small tear in the outer opening of my broviac. She called the on-call peds GI doc and they said it would be best to take me in to have it checked out because of the risk of infection. We knew the line was obviously weak because of the outer tear so we did not want it to open all the way. We got the the ER at about 8pm on Friday and then we had to be there until 4am. The peds surgeon on call was in a major surgery so we had to wait for him. It took them about 10 minutes to "repair" my line. Sunday night came along and Mom was getting ready to head out to some friends for the super bowl when Dad yelled for her help. I was crawling around on the floor and my line had come apart and I had blood all over. It would spew even faster out of my line because I was crying. Mom quickly washed her hands and tied a knot in my line. This stopped the blood flow. We quickly packed up to make another trip back to the ER. This time Mom talked to the peds GI on call and told them she and Dad wanted the darn thing out. Mom and Dad couldn't help but think...what if my line had come apart while I was sleeping and I bled to death. The risks are outweighing the benefits at this point in the game. Well because it was Sunday they would not take it out because it requires surgery to remove (not considered urgent) and Dr. Brown feels I still need it (more on that later). They did another "repair" and this time it seemed better. I am a mobile man and this makes it all the more riskier since I spend a lot of time on my belly. Also I am hooked up to my IV machine for 16 hours so Mom has to follow me around holding onto the machine and bag of fluid. She said this is silly and something needs to change.

My creatinine levels in my blood were high, so that can mean I am dehydrated. This is why Dr. Brown feels I still need fluids. We are not sure why all of a sudden I have there elevated levels. Because of this Mom draws my blood on Monday along with taking a sample of my urine to the lab. This allows them to do comparative ratios and keep an eye on my levels. The levels that they look at could affect my kidneys if they are high so that is why they don't want to take a risks and want me pumped full of IV fluids. I drink my formula, but the doctors said I must need extra right now because of my conditions. I see Dr. Brown this Wednesday, so hopefully Mom can discuss things further and we can come to a compromise on my care.

I saw an allergist on Monday Feb 2nd. I have had a few reactions to milk products to include butter and yogurt. I vomited on the yogurt and broke out in rashes around my face from both. Right now I have to stay away from products containing milk...that rules out a lot of things. I can't even have Goldfish crackers! I am still too young to get a reliable allergy test. The doctor said we can get blood now to run a few tests, but there are high chances for false negatives. We can do the needle tests when I am bigger. There is also the possibility that I could grow out of it which would be great. Dr. McMorris was who I saw and I really liked him. Mom had asked him if I could have more severe allergies to food because of my short gut since we don't have any history of food allergies in the family. He said it is probably more likely due to my stomach acids being altered from the Zantac and Zegrid I am on. There are always the goods and bads to all medical intervention. I have been on Zantac basically since birth. They put in in my TPN from the time I was born. I am still on it to help make my stomach neutral so the pancreatic enzymes can work better.

I also met with a Nephrologist (kidney doctor) on Friday Feb 6th. They agreed at this point that I needed more fluids based on my lad work. Mom was hoping they might have had something else to add to the reasons why or more of an explanation, but she didn't get what she wanted.

After my five visits to U of M this past week it was nice to take a break from that Maize and Blue place for a weekend. I have a peds well checkup tomorrow to get my Synagis vaccine and then off to Dr. Browns for full day at U of M again. I have yet to not spend over 4 hours there for one appointment. Pack your lunch and put on your crazy hat for that place.

Well life is good overall. I can't wait to see this white stuff melt and the green grow. Mom says the spring is a beautiful time of year and she is ready to put me in a jogging a stroller so we can both get out of hibernation.

Ben