Back to reality

Well our fantastic vacation ended abruptly with a bright and early doctors appointment with our new GI specialist at CHOC.  I was really nervous about this visit because we had to leave our fabulous GI specialist at Miller Children's hospital but I was pleasantly surprised.  Our visit today lasted over 2 hours he went over every detail of Liam's medical history since birth.  He reviewed his gastric emptying study and said that he has a severe case of gastroparesis.  His stomach emptying is almost non existent which makes sense considering he throws up food that has been sitting in his stomach for days at a time. I was highly impressed with his knowledge of pediatric GI disorders and he was great with Liam. Liam has to remain on his 4 medications for now and he switched him to pediasure instead of infant formula now that he is one. He will most likely have to keep his feeding tube for at least another year if not longer, he ordered us 3 more tubes so I can change it out at home (not sure how I feel about that lol). The mic-key button that he has has to be changed every 4 months or so.  He would like to do an upper endoscopy (where they put the scope down his throat and look at his esophagus, stomach, and small intestines) but he has to be completely put to sleep for that so we are aiming at doing it in the next few months. He did mention a second surgery they can offer Liam called a pyloroplasty to increase the size of the opening at the bottom of his stomach to allow food to pass through but I am very hesitant to do this. Overall I was very impressed with him and am glad that the change in doctors won't be too difficult to deal with.

Liam also had a bunch of lab work done by his metabolic specialist.  I came home from vacation to 15 pages of lab results in the mail! He has some concerning results, a very high creatine kinase (CK), an elevated carnitine as well as some other very specific metabolic results that were extremely elevated.  Liam goes back tomorrow for more lab work to see if they can further identify the issue.

Earlier this month he had and EEG done which came back normal, he will not have to go in for an MRI until he is two years old which is great news.

He continues to bring us so much joy, we will keep you updated!