Friday, November 28, 2008

Friday, November 28, 2008

I stayed with Mattie on thursday night and got to experience what Mattie's sleep pattern was like for myself. After last night, I can safely say I don't know how Peter managed this for a week and also went to work. Mattie had me up every 30 minutes. He was whimpering, calling out, at times crying, and said he was having a bad dream. Mainly he was having the same dream, there were a lot of people around him and they were trying to hurt him. Despite looking awake and disturbed by the dream, he was relatively easy to put back to sleep each time. The entire night was like this, and at one point I jumped into the hospital bed with him to rub his leg and try to calm him down. Patches, our cat, was intrigued by this, and she too jumped on the bed. I can assure you this bed isn't big enough for all three of us. Mattie finally fell asleep from 5:30am to 8am. At 8am, Mattie could see it was light outside, and announced to me that it was time to get up. When we got up, I asked Mattie if he was tired. He said that he wasn't, at which point I told him I was surprised by this since he was up most of the night. Mattie turned and looked at me, and with a straight face told me he slept through the night. He meant it too, he had no recollection at all that he was up so often last night. I am staying with him tonight as well and plan on observing what happens again. To me, Mattie is having night terrors. Night terror symptoms are: Sudden awakening from sleep, persistent fear or terror that occurs at night, screaming, sweating, confusion, rapid heart rate, inability to explain what happened, usually no recall of bad dreams or nightmares, may have a vague sense of frightening images. Many people see spiders, snakes, animals or people in the room, are unable to fully awake, difficult to comfort, with no memory of the event on awakening the next day.

Mattie had two visitors today. At 11am, Kathie (Mattie's occupational therapist) came to have a session with Mattie. Kathie is very familiar with Mattie. She worked with Mattie for two and a half years, since Mattie had some gross motor delays as a child. Kathie worked wonders with Mattie back then, and I couldn't think of a better OT to turn to now. I think having a rapport with Mattie is half the battle and she already knows what he likes and what works for him. Mattie is pretty much turned off to most visitors these days. So Kathie was prepared to get tossed out of our home. Kathie came with her bag of tricks. Mattie started out slow for about two minutes, and then I could see Kathie had him hooked. He was playing, was animated, and very involved in moving his right arm. While Kathie was working with Mattie, Sandra, our in home nurse showed up. Fortunately Kathie had Mattie occupied, so Peter and I could talk with Sandra. Sandra needed to see Mattie's tail bone ulcer. If you recall the last time Sandra did this it was a drop down drag out event, which left me feeling very guilty and Mattie very upset. Any case, Peter went to talk to Mattie and told him that he just needed to show Sandra his sore, and then he could go back and play with Kathie. This was a real motivator for Mattie. Mattie cooperated, but as soon as he showed his sore he then told Sandra she had to leave. All I can say is I am so happy we reconnected with Kathie. I have a very special in my heart for the OT work Kathie does, and if anyone can get Mattie moving again, it will be her. Even Sandra wanted to know who Kathie was, because she could see Mattie was very engaged.

Mattie and Peter spent the rest of the afternoon creating their Christmas display of lights. They have been accumulating lights for several months now. Mattie got all bundled up with a hat, scarf, cape, gloves, and a blanket in his wheelchair and was out there directing Peter as to where to place the lights. For just a brief moment today, it was like I saw a glimpse of the old Mattie. It was as if we cracked through the walls and protective shell he has so tightly built around him. Mattie used to be a very verbal child, but now I feel he has understandably regressed back into what he was like in his toddler years. The time period before he used words and could take care of his activities of daily living.

I could see putting together lights and being outside was a great activity for Mattie. It was wonderful to hear him talking and participating in what was going on around him. I tried to take a picture of their display in progress. Our neighbor, Malcolm called us tonight and thanked us for taking the time to brighten up our community with lights. Thanks Malcolm, your call meant a lot.

This week my mom celebrated a birthday, and I took her to see Giselle, the ballet, at the Kennedy Center tonight. My parents and I went out to dinner first and then we went off to the ballet. It was wonderful to leave my caregiving responsibilities behind for several hours and see and hear something beautiful. Giselle, though a sad story, was so well done, and there was so much energy in the air at the performance. My mom and I enjoyed our time together! However, when I got home Peter told me he had a very difficult time with Mattie because Mattie was upset that I wasn't home with him this evening. Peter said Mattie was upset for an hour, but Peter helped him through it. The irony is I told Mattie I was going out and I even said goodbye to him before I left.

I would like to share three e-mails with you that I received today. I thank all of you for your e-mails, they brighten my day and I always appreciate hearing your insights. The first e-mail is from Lesley, one of my sister-in-law's close friends. Lesley wrote, "I continue to start my day reading about your deepest pain and most challenging choices. Today, I am grateful for you! You have single handily taught me how to parent better, be proactive and understand the true gift of loving a child unconditionally. My wish for your family is sleep and full recovery in every sense of the word. Your son has more tenacity that any adult I have ever encountered (other than you)."

The second e-mail is from my good friend, Lorraine. Lorraine wrote, "I hope that God is listening very very closely to every single person blogging, emailing, sending, visiting, thinking, listening, hoping, caring, and wishing that Mattie's Thanksgiving next year will be joyously celebrated knowing Mattie is running around happy, pain free, healthy, and just being a special 7 year old boy, whom we all want to get better NOW." This is my wish too Lorraine!

The third e-mail is from Kathryn, a SSSAS upper school mom. Kathryn wrote, "The last time I was able to get on, I saw that Mattie was in a great deal of pain. I hope that is getting better now. I am praying for him and have lit candles in a church in Perugia, where my son is, and at the Tomb of St. Francis of Assisi in Assisi. I was also able to get a Mass said for him at that church in Assisi. I will bring you back the card. I wish I had better access to know how you all are doing but please know I am thinking of you. I have a little memento of St. Francis for Mattie. Please take the best of care. I continue to be in awe of your strength and courage. My college age son is also praying for Mattie. He was so very sorry to hear of all he is going through. I send a beacon of light to you from Florence where I am sure to light another candle for Mattie and you all. Please know, as I am sure you do on this Thanksgiving holiday, that you are not alone. We all are here for you in any way possible."

On the electronic front, we want to thank Emily W., Karen, and Brian Boru for all the wonderful e-cards! As we head into the weekend, our chemo decision weighs heavier on us. I can't believe how fast a week at home goes and the simple fact that we return to the hospital on monday for 6 days of chemo!