Our little guy is doing so well and we are surprised every day that we visit the hospital. Yesterday they started to tube feed Carson some of Heather’s milk. They gave him 7 cc’s and then checked him later to see what amount was digested. They pulled up what was in his stomach and found that he had digested all but 1 cc of the milk. This is very good because that means he’s tolerating the food and that his digestive system is working properly. Now we’ll have to wait to see what comes out the other end!
The doctors told Heather yesterday that Carson likely has an inguinal hernia. I would suggest not Googling that unless you’re prepared to see some boy parts. It’s an opening in the abdominal cavity into the scrotum. Inguinal hernias are very common in my family. I had one and had it repaired when I was a senior in high school. The doctors said that they will fix it at a later date since it’s not life threatening. It will be one more surgery where they will have to make an incision similar to how a c-section is, but usually only on one side of the abdomen. Really, take my word, don’t Google it.
Carson is having a lot of his medications reduced. He’s now only on cortisone and fentanyl for pain, and is still getting his “mountain dew” mix of nutrients. On Wednesday, one of his pic lines to his heart came out on accident. It’s nothing serious; they just needed to rerun the pic line through his leg instead of his arm. They also have removed his arterial splice that was in his foot. He didn’t seem to enjoy having that pulled out. But for some reason, he slept right through having his pic line put back in.
The occupational therapist is coming by today to see if Carson has the ability to bottle feed. It is really important that he be able to do this because the alternative is the stomach tube (G-tube) that we talked about in earlier posts. So we’re praying that he can figure out how to latch on and how to swallow properly with his new trachea tube. From what we’ve been reading, most kids with Apert’s are able to latch on and eat just as long as they learn to coordinate their breathing and swallowing. Carson shouldn’t have a problem with this since he has the trachea tube.
Lastly, today should be his first trachea tube change. Everything should be healed up by now. This is good news because we were told that once they change that out that we will likely get to hold him. So maybe today; we’re hoping!
Thank you for your prayers,
Steve and Heather