Saturday, October 25, 2008

Saturday, October 25, 2008

Peter gave me the luxury for going home friday night to sleep. It was a glorious feeling. Not hearing monitors going off every couple of minutes, was very welcomed. But I am not sure how to describe how I am feeling. Even though I should be grateful that I did get a night of sleep (and will tonight as well since I am home, and will return to the hospital in the morning), I feel so sleep deprived and have stress in every part of my body, that it is hard to catch up and feel better in one night. Mattie's cancer takes it toll out of Mattie for sure, but it has an impact on Peter and I as well. It is a family disease!

I got to the hospital today around 11:30am, and brought Mattie a happy meal. When I arrived, I found Mattie lying in bed listening to his iPod. Thanks to Peter, we finally are using this wonderful gift that Mattie's kindergarten class gave him. Mattie seems to love it! However, Mattie refused to eat anything until I arrived. Not because he needed me around, but because he will not eat hospital food. It doesn't even matter what they serve him, it isn't going down. So when he saw the happy meal, he started to swallow the food whole. He ate a good lunch and drank an entire vanilla shake. Right after he ate, Peter and I got him out of bed, dressed, and into his wheelchair. Mattie went off Fentenyl (the narcotic he was on) completely this morning at 8am (he does have access to it through the PCA button, so he can get it on demand if he is in pain), and the Bupivicaine (the perineural) was cut in half as well (down to 2mL/hr) and again no pain reported. The residents are also looking for signs of withdrawal from these medications. Mattie wasn't on these powerful drugs long enough, and he shows no signs of this.

Once Mattie was in his wheelchair, we gave Peter a break. Well a break is relative. Peter went to get his haircut and then went to the office, since he is headed for a business trip sunday/monday. So you get the picture, not a break. The first activity Mattie and I did was open a large envelope that Ms. DeLaurentis (Mattie's school counselor at SSSAS) sent Mattie in the mail. Inside the envelope were wonderful halloween cards from Mrs. Flanigan's first grade class. The cards were amazingly creative and adorable. Mattie got a chuckle at looking at each card. They really engaged him, and he loved how every card had gummy bunny snacks attached to it. Thanks also for the great Halloween pencil. On the pencil was attached a joke (Why did the cyclops quit teaching? He had only one pupil!) Mattie loved it. These cards put Mattie in a real good mood, THANK YOU! Then Mattie I moved onto the next activity. My parents gave Mattie a suncatcher set and I brought it to the hospital today. Mattie and I designed some wonderful suncatchers for a couple of hours. Mattie is very clever now. Because he is minus one arm, he uses his mouth when he can. On friday, Jenny and Jessie showed Mattie a book of art creations done by artists using their mouths or feet. These pictures made an impression on Mattie, and he is trying to adapt to what he has. He never ceases to amaze me. After the suncatchers were painted and needed to dry, I pulled out a book that Charlotte gave Mattie, "Around the world in 80 days." Mattie enjoyed this book, and we were able to look at the world map and locate the path Mr. Fogg took on his trip around the world. Mattie said he wanted to do this one day too.

I could tell Mattie was getting stir crazy. Who wouldn't in a 2x4. These rooms could make anyone unstable. So I asked Mattie's nurse if he could go for a walk. Because Mattie's pain meds are practically nil, she accomodated him. Mattie has incredible mood swings these days, and I have found no matter what he throws at me, I stay even keeled and try not to get upset. This seems to really mitigate the intensity of his reactions. Well walking with Mattie is a production, especially when you are doing it by yourself. I had to push his wheelchair, as well as his IV, and hold all of his tubes hanging from the IV pole. You had to see this to believe it. Now really once you get the hang of it, it isn't so hard. But here is the issue. The unit has double doors every 100 feets or so. Major problem, because the doors do not have a button you can push for them to open automatically. So not only did I have to balance Mattie and the IV, but I had to somehow open up four sets of these heavy double doors. By the time I did five laps with Mattie, I felt like I got my exercise for the week. In the age of accomodating people with disabilities, it shocks me that the fifth floor of the hospital doesn't have this type of automation, especially when you have kids confined to wheelchairs on the floor who want to get around.

Mattie then started to get tired, and had to go to the bathroom, so I knew it was time to turn back. There after, my parents arrived and they purchased a halloween video for Mattie and they all watched it together. While they were watching the video, I received a call from Ann. Ann gave me an update on today's Team Mattie bake sale. I am saddened that the Saints team did not win the football game, and also that Team Mattie was stuck outside in the rain. I have no doubt that the weather affected turnout. However, despite the rain, the team kept selling baked products and Junko had a great idea to bring hot chocolate to sell. I am sure that went over big today! Good thinking. Thank you Ann for coordinating this, your energy and determination inspire me! Thank you Danelle for all your assistance and for also taking pictures. I also want to give a special thank you to Vonnique Van Way and Mark Dowling, their son Sean, Tanja Mayer, Carrie (my TA) and Ann Kim (a wonderful student of mine) for their incredible help from start to finish. I thank everyone who participated in the bake sale, it means a great deal to us. Also I want to thank Coach Dave, because I hear a signed photo of the football team is headed our way. Some of you may remember that last week, Mattie and Charlotte went to the upper school and met Coach Dave and the football team. At this visit, I took a picture of the Saints with Mattie. This week, I received a lovely e-mail from Marian (an SSSAS mom) who developed and blew up the picture and Coach Dave helped secure the signatures. What a special gift!

We want to thank the Fergusson family for a tasty dinner tonight. Mattie LOVED the watermelon. Thank you for sharing some treats with us from Mattie's bake sale. That was very thoughtful of you, especially since you were coordinating a birthday party today for your daughter. We look forward to seeing the movie, "Wild." We haven't seen it yet, but I can relate to the plot. Animals who want to escape from the zoo!

On the electronic front, thank you Brian Boru, Susan, and Karen for your wonderful e-cards. As we head into sunday, we are getting ready to be discharged from the hospital. Of course this is a very positive thing, but part of me can't help but worry about how will things progress at home with Mattie, pain wise, and logistically. Mattie hasn't been walking much at the hospital. It appears that a couple of steps wipe him out, so part of me wonders how he will manage at home. But I realize like everything else, I need to take it one day at a time.