Today's Appointments

G-tube:
Cayman's G-tube is fine. Nothing wrong with it or infected. Since the stitches are no longer intact, we have to be extra careful to not pull on the tube so that it does not come out. She'll have the G-tube in for another 2 months even if she doesn't need it. I guess they want her stomach to adhere to the wall of her abdomen which takes about 3 months after the G-tube is placed. She's had it in for one month, so we have 2 more to go. There's a problem in removing the G-tube before the stomach adheres to the wall of the abdomen. The skin hole closes up very quickly, but the hole to the stomach takes longer to close. If the stomach is adhered to the wall of the abdomen then it acts as a "plug" to the hole of the stomach. So if the stomach is not stuck to the abdominal wall then there's an open hole for fluid to leak into or out of the stomach. Hopefully I explained that well. We were hoping to find out if they could change out her current G-tube (which is called a Malecot), to a button G-tube. The button device would sit flush to her skin so there would be less worry that it would get caught on something and get pulled out. However, the end that inserts into the stomach (called the balloon tip or mushroom tip, which is what helps hold the G-tube inside the stomach), is too large for a newborn's stomach. It could block the opening in the stomach to the intestines. They generally place the Button G-tube when the baby is around 2 months old. So we have one month to wait for that. But for now we're really enjoying the free hours we have from the chimney. We only use the chimney during Cayman's feeding time. We feel much more mobile with her now.

Neurosurgeon:
Last week the Neurosurgeon said Cayman's fluid is draining too quickly, decompressing her head to an unhealthy level for her. Her head measured the same today as it did last week (41 cm). Her soft spot looks less sunken. So the doctor's words were, "It looks a little better, definitely not worse, but we're still far from where we want to see it". So he's going to continue to watch it over the next few weeks, which means going to Ann Arbor for us. If it doesn't get better then he's going to take Cayman back to surgery, put in a 2nd shunt that will regulate the valve setting from the shunt she has now. This will slow down the fluid drainage. Unfortunately shunts are not made with a shut-off valve, which would be the most ideal for Cayman in her situation right now. If there was a shut-off valve, the doctor could just stop the flow of the fluid in her head, and then turn it back on once her head has expanded so her skull bones aren't overlapping and her skin isn't stretched over top of the shunt. I know it doesn't sound like it makes much sense that her skin is so stretched if her head is shrinking. What is happening is, the way her skull bones are overriding each other it is pulling her skin upwards tight across the top of the shunt. I'll have to take a picture because that might explain it better than my words.

Duke:
We finally have our date set to go to Duke University for Cayman's Stem Cell Therapy. One of my previous blogs I had shown a video about it. This webiste tells more about this stem cell therapy that has been done on kids with Hydrocephalus. We leave for North Carolina on Saturday...yep this Saturday! It was just decided today. I feel like I'm about to go out of mind trying to figure out how to get ready for this big trip that we're so excited about!! Mike will work Friday night, sleep some on Saturday and then we'll leave. His boss and everyone he works with has been such a blessing to us. Mike's had to take off so much work over the last month with Cayman and they have been so understanding. That has made things so much easier for us. We're driving to Duke. We estimate it will take about 12 hours. We thought about flying but Duke thought it would be easier on Cayman if we could drive since the pressure on airplanes can be harder on babies. So we'll drive most of it on Saturday, stop for the night, and arrive there Sunday. We'll be there through Wednesday and then head back to Ohio.