No fruit smoothie for you!
After devoting 16 hours playing catchup at work yesterday, it was too late and I was too tired to spend time on the computer last night. Dick and I got back to Abbott about 9:30 this morning only to find that what we were hoping Kevin would be able to avoid has in fact developed. In it's destructive path down the mucosal lining, the mucositis has hit the stomach and colon and caused debilitating diarrhea. It is also causing acute gastric distress and continues to play havoc with his mouth and throat.
Yesterday they decreased the Dilaudid from 1.3 to 1.2 mg/hr which didn't help the discomfort. Today, while Kevin was trying to eat some lunch--broth and Ensure--his heart rate went up to 250 beats/minute! It would come back down slightly, then go back up again to a dangerous level. They said it was caused by the pain from the food traveling down the esophagus. Dr. Flynn ordered Kevin to have only ice chips and water for the next 2 days and increased his Dilaudid back up to 1.3mg/hr. His counts are still very low, WBC's still at 100, Hemoglobin was 7 today so Kevin was infused with 2 units of packed cells this morning. His platelets were 17 today, up from 8 yesterday. They did infuse 3 units of platelets yesterday. The oncologist said with the type of chemo that Kevin received, it will take longer for the cells to come back up. All hopes of getting him home over the weekend were dashed.
Dr. Bendel, Linda Madson, and Sue Perdie--Kevin's fantastic team from Children's--came over for another visit this afternoon and brought Kevin a fruit smoothie made from fruit concentrate (he can't have any fresh fruits). Kevin loves fruit smoothies. But their timing was not good--arrived just after the order allowing only ice chips and water, so Kevin wasn't able to enjoy his smoothie--life just isn't very fair!! What a long and trying ordeal this is proving to be for Kevin. He is getting so bored and sick of his hospital room. But most of all, the constant pain and debilitating fatigue are wearing him down. His spirit uplifted today when I brought him his SJU fall schedule. He has been working with his academic advisor over the phone and was able to get the classes and professors he wanted. He did sign up for 20 credits, trying to make up for missing a whole semester. But I am trying to convince him to drop a class and only take 16, since taking 5 college honors classes combined with work study is a handful--especially when you aren't at 100% in the health department.
I want to thank everyone for all of the thoughts, prayers, Irish jokes, and humor and encouragement that you have been entering in Kevin's guestbook. Keep it up! He checks it often and it helps lift his spirits knowing that so many people are thinking of him. For a mom, it is very difficult to see your child--no matter what their age--in pain and not be able to take it away. It is also very draining. Thank God Dick is here with me. When we get back to the RMH in the evening, we usually walk over to the U of M campus and have some dinner, then just relax in the room before hitting the hay. This is a time when I try to unwind and not think about hospital--gives me strength for the next day.