July 6, 2010

No new pictures, but I wanted to type up a blog about Charlotte's appointments in Milwaukee today. She saw Dr. Arvedson (speech therapy) and Dr. Stephens (GI).

Charlotte impressed Dr. Arvedson and took water from the spoon like a pro. She even took sips out of a plastic cup but threw up as soon as applesauce was introduced. Dr. Arvedson said we should try to stop feeding practice before it gets to that point but she'd wanted to push her a bit and see what she'd do. She also advised we give Charlotte flat suckers, pretzel rods, and whole pickles to put in her mouth. I'm looking forward to seeing what she does with them.

Dr. Stephens has joined Pat and I in the 'Concerned about Charlotte's Lack of Weight Gain Camp' and wants to take some steps to reduce the amount she throws up.

Her measurements today were:
Weight: 15 lbs 6 oz (6.985 grams)
Length: 25.2 inches (64.1 cm)

Dr. Stephens is recommending we replace Charlotte's Gastrostomy tube with a Gastrojejunal (GJ) Tube, and he placed the order for a GJ Tube so that we can come back as soon as we'd like to have radiology put it in. The GJ Tube will bypass the stomach and deposit feeds directly into the intestines, theoretically preventing Charlotte from throwing up. A picture of a GJ Tube can be seen here: http://www.mountnittany.org/assets/images/krames/115616.jpg

Once on the GJ Tube Charlotte will need to be on continuous feeds, meaning she'll be connected to her pump for most of the day. Currently she is connected 14 hours a day - 2 hours on, 1 hour off from 4 a.m. to midnight at a rate of 70 mls/hr. Now, we're going to reduce her rate to 60 mls/hour over 16 hrs/day starting at 5 a.m. and ending at midnight. We'll be playing with the timing and feed rate over the coming weeks and hopefully she'll keep more of her feeds down.

We're happy the medical part of our vacation is over and we can relax and enjoy the beautiful (and humid!) summer weather.