Monday = No Fun Day (1 of 2 new posts)

This is a long one…hang in there folks…

Monday was not a good day. In fact, Monday was probably the worst day yet. And by “yet” I mean from all her past surgeries. The weekend was fine but as Sunday came to an end Al’s mom and I started to notice that Al wasn’t the same as she had been from past experiences. Something was off.

Well, Monday morning started out on a bad foot. Al couldn’t sleep again and was very disoriented. She tried to call some people and send some text messages but when she was able to get in touch with someone the world was just spinning around her. We wouldn’t find out why until early Tuesday morning so the next 24 hours were scary, emotional, heartbreaking and upsetting all wrapped up in this tiny hospital room. We’re talking legitimate 5150 here.

I had to go to work so Al’s mom spent the day with her. We expected Al would be tired and a little disoriented but all she needed was some sleep. At this point Al hasn’t sleep for any extended period of time since her surgery. In fact, Al still couldn’t sleep at all and the confusion was worse. On top of this Al was having trouble getting her eyes to focus. The rest of the day was filled with emotional moments, despair, confusion and lots of questions. Al was in really bad shape and she had reached her breaking point. It broke our hearts to see her so upset…so broken. You could see the fear and despair in her and there was nothing we could do to help.

I spent that night in her room so she wouldn’t be alone. And just like the day, the night was filled with the same emotions and confusion. But she was finally able to close her eyes and get some sleep for at least a few minutes. As the night drew on she was able sleep a little longer. Half hour. Then 45 minutes. Then a little over an hour. Then close to an hour and a half. Each period of sleep was interrupted by frantic trips to the bathroom (her urinary catheter was removed so we had to unplug all the machines and shuffle to the bathroom before it was too late), checking vital signs and moments of painful coughing. As the sun started to come up the periods of sleep were nearing two hours and when Al was awake things were more controlled.

The surgeon visited us shortly before 7:00am for the daily check up. Al was better now than she had been at any point in the past 24 hours. She is still having vision issues and confusion but not nearly as severe. This is the moment we learned why the past 36 hours or so were so terrible.

Al was taking Entocort, a glucocorticosteroid, prior to surgery as prescribed by the GI doctor. Entocort is used to treat pouchitis and they were trying to make Al’s J-pouch as healthy as possible for her new K-pouch. That part worked perfectly.

The problem with Entocort is “it can reduce the response of the hypothalamus-pituitary-adrenal (HPA) axis to stress. In situations where patients are subject to surgery or other stress situations, supplementation with a systemic glucocorticosteroid is recommended.” Basically, Al didn’t receive this supplement until the doctor saw her on Monday morning and the rest of the time she was going through a severe withdrawal or reaction and the stress of surgery was compounding things.

I cannot imagine the terrible fear she experienced as her mind and emotions ran out of control. She was seeing and hearing things that were not there, she knew something was wrong but couldn’t get control of it and there was nothing we could do to help. At one point in the early hours of the morning she said to me in a simple matter of fact voice “there is a 3D image coming from the TV of people in polka-dot shirts sitting on a park bench”. The TV had been off for hours. Al had reached her limit and couldn’t fight anymore.

Tuesday started better and the sleep Al was getting Monday night continued.