It appears Ayden, for what I believe is the fifth time in his young life, is dealing with sedative withdrawal.
The short version: Allison called me yesterday afternoon, concerned about Ayden being inconsolable all day. Our initial thought was go to the pediatrician. After Allison checked Ayden's oxygen saturation and it was low, the pediatrician was replaced by the hospital. Dr. K, who thankfully is on service this week, admitted him to the floor yesterday afternoon, which is where he still is right now. After seeing how he was acting for a while, my gut reaction was withdrawal (Ativan tapered off a few days ago). So far, x-rays and bloodwork have not produced a competing theory. Withdrawal remains the most likely explanation. As miserable as that is for him, it's probably the most desirable one.
I think he's ready to go back home. Allison thinks they'll hang on to him for another night. Unfortunately, she's probably right. Please keep him in your thoughts and prayers. The hospital is a miserable place for him - for all of us - to be.
So sorry. We had that happen badly once...we didn't know what was wrong....we were in Jackson and B had to be emergency transported in a huge ambulance that could hold lots of people to care for him on the trip....all to find out that it was just because his methadone taper was too aggressive and he was experiencing cramping and irritability from the withdrawals. He was so sick. I felt so helpless. We adjusted the taper to not be so aggressive and things got so much better after that. So, so sorry you are having to go through this over and over. It's so not fun. What's crazy is, and remember this....when he has his Fontan...his body will STILL have a tolerance level to all the pain meds and sedatives!!! It took a LOT more to keep Mr. Blake down and comfortable than what is normal. And the more we tried to make him comfortable with MORE pain meds, the more he dealt with stomach issues that led to cramping that was worse than the pain from the surgery. So, we actually had to just not give him anything but plain tylenol, even while he had chest tubes. BUT, I will say, Blake's pain tolerance is SO HIGH. There were days with the chest tubes he didn't even need Tylenol! Amazing and true!! I was so thankful he didn't experience a lot of pain this time. Hang in there. He'll be eating cheetos and telling you he needs to go potty for the 15th time in a day before you know it! :)
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