Camden had his first short bowel clinic yesterday at Children's Hospital in Boston. He slept all the way to the hospital. We arrived an hour or so early so we had to see who was working on the 10th floor and visited for a while. They even helped us figure out why his extension tubing on his G/J tube wasn't fitting right (we removed the small tip of an old extension tube, and now it fits great!!). The nurses were all happy to see how much weight he has gained (almost 2 pounds since discharge!).
We then went to the clinic, and got an official weight, length, and head circumference. Camden is up to 11 pounds, 12 ounces, and his length and head are in the 30th percentile! We met with the social worker, pharmacist, whom gave us our month supply of Omegaven, and the doctors. They were all so pleased with his progress, and how hungry he is acting, that they decided to make some changes in his feedings.
First we are taking him off his tube feedings during the day, and giving him his total amount of tube feedings in 12 hours over night. Camden can now take all the bottles he wants and can tolerate during the day! We also are decreasing his TPN to twelve hours at night, as well as his TPN on 5 nights a week. He will receive sugared saline on his other two nights. One of his GI medicines was stopped too. We did not have any blood work drawn, his discharge labs were great. So our next visit won't be for another three weeks!!
After the visit, Dr Duggan came back into the room to ask if we would consider having Camden be the face of short bowel syndrome for an article Children's Hospital is putting together. They are publishing all of their data about short bowel, STEP procedures, and progress of kids, but needed a child! We said of course, and are awaiting the PR department's call.
While we were in Boston we stayed in a lovely B+B called Hotel Hanson, which had great service, and comfortable bedding! Camden finally slept a night between Andy and myself. I don't think I got anymore sleep, but it was nice!!
The picture is my dad and Camden during his visit on Sunday!
3 comments:
I knew someone in the family would become famous and it looks like Camden is the STAR. Such wonderful news you shared. I feeling bad I haven`t been down yet but I don`t dare with this cold or what ever it is. Uncle Rodney is making me chicken soup today so hope that helps. The pictures are great what a smile. Jen was happy to hold him, said when he hears Mom or Dads voice he lights right up with a smile and giggle. We will be down as soon as we are healthy again. Thank-you Maddie for my phone message and song.
We love you all Aunt Eunice
So good to hear that everything is going so well!!! Sometime this spring hopefully all the little kid germs will stop causing illness in our family, so we can come over and visit! Thinking of you guys!
-Angel
Hello Veazie Brown's
It is so good to see the new picture of Camden with Tonya's dad. We were thrilled to talk to you last Thursday and hear all the great news! Camden is doing great! Wish you could be down here in Captiva with us - maybe sometime in the next few years!
Hugs and Kisses!
Love, Aunties Flo & Nancy
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