Saturday, November 29, 2008

Saturday, November 29, 2008

Friday was another rough night. Mattie continues to have night terrors. However, it is not just one time during the night, these episodes occur from 1am until 5:30am. I saw the same sleeping pattern on thursday night that I saw on friday night. At 2:30am, Mattie's screaming was so loud, that it woke Peter up and he came running down from our bedroom upstairs. Peter could also see that Mattie was disoriented and was speaking nonsense while he appeared awake. Needless to say Peter and I are exhausted, which is not a good position to be in with the chemo cycle we begin on monday.


It is no surprise with the level of stress, tension, the emotional rollercoaster we live from moment to moment, and sleep deprivation that one of us is now ill. Peter came down with a violent stomach illness today. I know a stomach bug is going around, and unfortunately Peter got it. He is worn out, tired, and not feeling well. So I have told him to rest and stay upstairs today. Not an easy thing for Peter to do, since he always wants to help and ease the load around here with Mattie.

In addition, to worrying about Peter, I am concerned about Mattie's night terrors. So much so that I felt I needed to do something about it. Some people call 911 when they have a problem, I just e-mail Ann. Ann told me to call Bob at home. So I did! Bob discussed the night terrors with me, and he concluded that they could be caused from Mattie's prolonged usage of fentanyl, which is a narcotic. Bob prescribed something different for Mattie today. However, because this drug is also a narcotic, Bob couldn't call the prescription into the pharmacy. I needed to actually have a written prescription in hand to take to the pharmacy. So I immediately called my parents and told them they had to come over to help me. A last minute request that only a parent couldn't refuse! I told Mattie that he better behave himself with his grandparents because Peter is sick and I had to pick up a prescription at Bob's house. When my parents arrived, so did Sandra, our in home nurse. By now you already know what Sandra came to examine, that's right, the tail bone ulcer. Mattie cooperated and showed her his sore. At this point, he is probably so used to all of us looking at his tail bone, it is becoming second nature for him. After Sandra left, I jumped into the car and headed to Ann and Bob's house. Bob talked me through the pain medicine regimen and then I also asked him for his input about our monday chemo decision. I believe Peter and I have heard enough information to know what we need to do, which is adding I and E. We can't ever regret that we did not treat this as aggressively as possible and we may not get a second chance to make such a big impression on this disease.

Mattie and I spent the afternoon building all sorts of puzzles together. He even played with this flexible tube Kathie gave him yesterday. He was exercising and did not even know it! He even moved his left arm today. He literally lifted it up on his arm rail of his wheelchair. I view that as progress. It is hard to describe what our days are like, they are more like big blurs, where we can't distinguish morning from night time. Since we basically do the same things all hours of the day. My parents came back this evening to visit Mattie. They were expecting Mattie to ignore them again or yell at them, but instead he started to play with them. They built a puzzle together, had some dinner, and are now working on his Mac computer that Mary Dressendorfer, from SSSAS, has allowed him to borrow this year. He is working on designing all sorts of things using Kidpix and having a good time. I view this as good hand exercise as well!


On the electronic front, we want to thank Lorraine, Brian Boru, Emily W., Ms. Pollak, and Grammie for your wonderful e-mails and e-cards. I also want to thank Kathryn for lighting a candle for Mattie at the Duomo in Florence today. We also want to thank Susan D. (Mattie's school counselor) for the wonderful singing Thanksgiving day card and Barbsie for the wonderful "Shut the Box" game. We are looking forward to playing it together. As we head into sunday, we know that we have so much to accomplish to get ready for monday. A day that has come too quickly, and we really need another week to continue to recuperate. I only wonder what Mattie's emotional state will be like next week once we add chemo to his already fragile condition. Thank you for your thoughts and prayers, they are all appreciated and continue to be so needed.