A lot has happened since the last post. I didn't want to write a post and have it full of half information, so I waited to have something more concrete to report. Alex's reflux got really bad at night again during the past few months. We tried a number of different things to alleviate his symptoms, but about a month ago, we put him back on Zantac at night in addition to his Prevacid in the morning. It does seem to be improving things enough that we are going to stay with it for awhile.
Recently, Alex started having days where he would become lethargic, refuse food, develop bad stomach pains, and have painful muscle cramps throughout his body. This has been extremely concerning and baffled his doctor. He had a complete abdominal ultrasound, underwent a sweat test looking for cystic fibrosis and blood work run. Everything came back normal. When I talked to his doctor this week, I could hear the disappointment in his voice with the negative blood work. He was really hoping something concrete would show up - as we all were. So for now, we will just keep monitoring that and be in touch with the doctor if it continues.
In February, Alexander had his sleep study. In was a looong 8 week wait for the results, but last week we got them. Holy Moly. We knew his sleep was terrible, but it was validating to have the test results. I was worried because the night of his study wasn't a particularly bad night's sleep. After reading the results, I can't imagine what he must go through on a bad night. For 10 hours of sleep, he only had 37 minutes of REM sleep. He spent 8 hours trying to get into REM sleep and cycled through the 4 sleep stages almost 300 times. His "sleep architecture is severely disturbed" and he also has sleep disrupted breathing. Because of the breathing difficulty, he will be having his tonsils and adenoids out when school is over. The report also said, though, that the majority of his sleep trouble was NOT related to his breathing. I'll be calling the ENT next week and see if we should be seeing a sleep specialist, as well. (I didn't actually see the sleep report until we left the office). We also want to make sure this isn't going to aggravate his swallow issues or laryngospasms.
The past few weeks in particular have been very stressful ones for us, and quite the emotional rollercoaster. Right now we are just settling into the present plan. We appreciate all of the emails, messages, and expressions of concern. We are surrounded by some really great people.
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