MPS affects everything and one of the first things Christian lost, after talking, was the ability to swallow. When he got his g-tube I was pregnant with Caleb, which was just about 6 years ago.
Everyone swallows 1-2 liters of saliva every day, so you can imagine what that looks like when you can't swallow. It's messy, and cough-y.
Christian has been coughing a lot and seeming uncomfortable.
We decided to go ahead with a procedure called salivary gland ligation, which permanently renders the four saliva glands as non-functioning. You still produce saliva in other glands, but those are the big ones. We're hoping that this helps him be more comfortable.
While he was sedated, our dentist was supposed to have been schedule to work on his teeth but was not. He happened to have a cancellation and raced across town to yank out 11 baby teeth, all on the verge of coming out and falling down his trachea. The poor kid...
He spent the night at Strong Hospital and was loved on by a rotation of family members and nurses while being neglected by doctors. He was pretty miserable for about 5 hours while his nurse paged the doctor three times for morphine. Apparently the doctors thought that ibuprofen would be enough??? He also had to be on oxygen for a while the narcotics wore off.
After that he was calm and Jason spent the morning at the hospital tapping his toes. Getting a person discharged can be a lot like leaving the earth's atmosphere. Or removing super glue. Or getting a two year old to say "yes."
He came home around 1 pm today which makes Jason an official rock star. Our nurses are taking care of him overnight tonight and he'll be home for the rest of the week recuperating.
We will also be recuperating among the piles of laundry, dirty bathrooms and stacks of mail.
