The Past Month or so and an Upcoming Surgery
It has been over a month since our last post so we have a little catching up to do.
Evan is walking very well now, he’s all over the place and into everything. We’re still working on getting him to stand up on his own without holding onto something for support. It’s crazy how quickly he started moving once he got started, within a couple weeks he went from not walking at all to walking the entire length of the house.
Christmas was fun. Evan is not spoiled… at all. Can’t you tell?
Who knew they made roller coasters for kids? Amazing! And Evan loves it…although you would not always know it from the look on his face.
Evan’s Roller Coaster from William Wood on Vimeo.
Evan found his g-tube extension in the bag and attempted to put it on by himself.
Evan Tries from William Wood on Vimeo.
We have been fighting with Evan’s g-tube site for a while. It leaks profusely and it looks angry, red and irritated. It’s not terrible, but it’s not what it should look like. We made an appointment to have it looked at by our pediatric surgery office at Bronson in Kalamazoo. The surgeon that put the tube in was in the office so he came and took a look at it. His assessment was that the tissue we were seeing was not granulation tissue but was instead gastric mucosa … in other words, the tissue we’re seeing on the outside is stomach tissue and not the normal tissue that occurs as the body tries to heal over the site. It’s hard to explain without drawing you a picture… there are several layers of different types of tissue between the outer layer of the skin and the inner layer of the stomach. The layers have compressed and essentially turned inside out, I guess. In any case it’s not really repairable and the site needs to be closed up and the g-tube placed somewhere else entirely. If you recall what happened during the first surgery you’ll understand that we do not want to have the surgery at Bronson. Not because we think they were negligent or anything like that but because we want Evan to be somewhere that deals with heart patients if something “spirals out of control.” We were unhappy with the level of care that we received from the consultations with GI at U of M so we started looking at other options.
We chose Cincinnati Children’s hospital. They are about 5 hours away and have a phenomenal GI program (3rd in the nation) as well as heart program (8th in the nation). We had a consultation with them on January 3rd and were pretty happy with the doctors that we spoke with. Dr. Jason Frischer was very nice and helpful. While we were there we also talked to a GI specialist about Evan’s vomiting and a dietitian about converting Evan to a more appropriate diet for a 16 month old. We still have to schedule a consultation with cardiac anesthesiology and then the actual surgery. We’re hoping to have it done later this month. We’ll be in Cincinnati for a few days for the surgery and recovery.
