Yesterday the endoscope showed that Levi has a tiny ulcer at the end of the esophagus. This is why he has been vomiting blood. They won't do anything to treat it because he's already on Nexium, which controls stomach acid, and it was likely caused from so much vomiting. The area around the button looks beautiful, so at least that set my mind to ease and I can dismiss that from my list of concerns.
He has been super fussy since the procedure yesterday. He was up off and on last night, and screaming this morning. I thought he was in pain from the scope, but Dr. Rosenblum said that shouldn't cause him any pain, so he put in a consult for neurology. He's thinking it may be related to muscle tightness from cerebral palsy. Sure enough the neuro residents came in, and they think that is what's going on. Sometimes when he's on his stomach he will rear way up. I thought he was just mad. I should have remembered that he was doing that when they started him on baclofen, and it stopped. It's due to muscle spasms. They are going to increase baclofen by 5-10 mg a day. Dr. Rosenblum thinks it may also help him have bowel movements by relaxing the tightness of the anal sphincter. Wow, that would certainly be an answered prayer! He is going ahead with the referral to Nationwide Children's Hospital in Cincinnati to the motility clinic there. The doctor at that hospital is the number one motility specialist in the country! It would be amazing if baclofen fixes the problem, but if not at least we have other options.
He's trying to sleep right now, but he's still very uncomfortable. The swallow study has been pushed off again due to his irritability. Please pray for him!
He has been super fussy since the procedure yesterday. He was up off and on last night, and screaming this morning. I thought he was in pain from the scope, but Dr. Rosenblum said that shouldn't cause him any pain, so he put in a consult for neurology. He's thinking it may be related to muscle tightness from cerebral palsy. Sure enough the neuro residents came in, and they think that is what's going on. Sometimes when he's on his stomach he will rear way up. I thought he was just mad. I should have remembered that he was doing that when they started him on baclofen, and it stopped. It's due to muscle spasms. They are going to increase baclofen by 5-10 mg a day. Dr. Rosenblum thinks it may also help him have bowel movements by relaxing the tightness of the anal sphincter. Wow, that would certainly be an answered prayer! He is going ahead with the referral to Nationwide Children's Hospital in Cincinnati to the motility clinic there. The doctor at that hospital is the number one motility specialist in the country! It would be amazing if baclofen fixes the problem, but if not at least we have other options.
He's trying to sleep right now, but he's still very uncomfortable. The swallow study has been pushed off again due to his irritability. Please pray for him!
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