Wednesday, November 19, 2008

Wednesday, November 19, 2008

Messages of the day! Thank you Debbie P. and Charlie!
"Life is God's gift to you......what you do with your life is your gift to God."

"Faith is the light that guides you through the darkness."

Sometimes I think if I did not write the blog, there would be NO way I could keep track of time. If someone did a mental status exam on me, I would probably fail it (I am somewhat kidding of course!). I am disoriented to time and place most days. In fact, if I did not write the blog, I wouldn't care to know what date it is, what time it is, or even be able to remember one day from the next. There is no predictability to the days anymore, and the lack of predictability only brings about more stress, and a certain degree of frustration and numbness.

Mattie had a wild tuesday night. He did not get to sleep until 1am, and then was up on the hour. He was complaining of pain. In addition to the pain, which is hard enough to deal with, Mattie whines, and becomes super agitated and demanding. Certainly one can take an hour or so of this behavior, but a whole night of this on top of our already depleted state was over the top. Peter and I are super patient, but last night broke us down. We could see ourselves getting frustrated at each other and at Mattie. At one point last night I was so tired that the idea of jumping up one more minute to ask for pain medication for Mattie, to comfort Mattie, to administer the pain medication (if it is oral meds, I am the only one Mattie will take it from), and to get Mattie back to sleep (which involves massaging his hand) seemed all too overwhelming. However, while I took a minute to regroup my emotions and sat down, I stopped, looked over at Mattie, and could see him quietly crying to himself (since he did not want to bother us one more minute). Well, the mom instinct kicked in, and I flew out of my chair, and found whatever energy I had to muster to get the job done. We were dealing with two nurses last night, a HEM/ONC nurse in training and Ellen (one of our trusted and faithful HEM/ONC nurses). By 6am, I had it, and when Ellen walked in the room, I told her it had been a terrible night, and she could see I was worn out. She moved into action, and got Mattie morphine and he slept from 6:30am until 9:30am. That was a royal blessing. Mattie's expression on his face last night is one that I won't forget any time soon. To see a six year old sitting in bed, in pain, and crying to himself, but quietly doing so as not to disturb us, just broke my heart. He on some level knows that Peter and I are tired, and that his behavior (though rightfully justified since he was in so much pain!) can be wearing. I just couldn't get over that in the midst of his pain, he was thinking about us.

The other issue I am dealing with is Mattie refuses most visitors these days. He has no problem throwing people out, pouting, and ignoring questions coming his way. When I confronted him about this today, it appears that the main issue is he feels that others distract my attention from him. He says he wants to play with me and basically wants my 100% and undivided attention. Mind you, this is very sweet and a royal compliment, but it also isn't realistic. When I stepped outside the room this afternoon to talk to a mom from RCC, Mattie pitched a fit and when I came back in the room, he said that he will not believe anything I tell him ever again. That I break my promises when I tell him that I am going to spend time with him. Of course, within minutes he blew passed this sentiment, but at times I feel embarrased by Mattie's behaviors to family and friends. I realize I have to get over that, and others understand on some level Mattie's reactions.
Mattie had a visit from Ann today. Ann came bearing lots of things and gifts. Thank you Ann for a wonderful lunch, and Mattie is enjoying the Scooby Doo mac and cheese. The other meal of choice this week. Mattie ate an entire vanilla frosted donut too, so the one donut a day principle is back into effect. Ann always finds something to engage Mattie in, and today she brought him a present that when submerged in water, turned into a Christmas wash cloth. It was adorable, and got Mattie talking about Christmas. Then they worked on a "grow your own pirate treasure." Basically you place a 'grow toy' in a large container with water and after 10 days of soaking, the toy will transform up to 600% its size. Mattie is looking forward to examining this treasure each day! Ann also brought Mattie an eyeglass straw. Ann snapped some pictures of me demonstrating the glasses to Mattie. Thanks Ann for your wonderful banana bread too!

Anna, Mattie's physical therapist, came today to help Mattie transfer from bed to a chair. The transfer went smoother today, and Ann was there helping us as well. While in the chair, Mattie had a very active day! Ann entertained Mattie for a little while so I could eat lunch, but Mattie doesn't like me straying far or for long, if at all. Ann and I got out the floam that Mattie received from Margaret this weekend, and Mattie started to work with the floam using his right hand. It was excellent physical therapy for Mattie, and he even used the floam to cover some plastic animals. It was thrilling to see him use his hand so productively! The fun continued when Lesley and Whitney came to visit, and they were in amazement of the floam activity.

This afternoon, we had a visit from Liza M. Liza brought Mattie some homemade pumpkin butterscotch heart shaped muffins. Mattie demolished one later this afternoon. He said it was delicious. Mattie is into bread products this week! Liza also gave Mattie a card game that I look forward to playing it with him, and Liza gave me a lovely door hanger that says, "where there is faith, there is hope and where there is hope there is everything." What a beautiful sentiment! Liza shared with me that Katie (her daughter) and Tyler (Charlotte's brother) are brainstorming another fundraiser for Mattie geared toward teens. Thank you Katie and Tyler for supporting Mattie and caring for him so deeply.

Later in the day, we had a visit from Katie Parker, a RCC mom, and a physical therapist. Katie shared some great resources with me and Anna (PT) as we try to figure out all the best rehab options for Mattie. Thank you Katie for coming and for bringing us a nice dinner. Also a shake for Mattie and I were such nice treats!

Anna came back later in the day to help us transfer Mattie back to bed. The transferring back to bed is always more challenging, but Mattie was a trooper. In addition to the transfer, Catherine, Mattie's nurse, placed a fentanol transdermal patch on Mattie's back. This will help to safely maintain this pain. Mattie is also developing a redness patch on his back, not a bed sore yet, but a redness, and while he was sitting at the edge of the bed, Mattie was able to get some cream on it. Once Mattie was back in bed, Anna helped Mattie do some more exercises. Mattie was able to use his right hand to do some fishing using the magnet fish that Jenny and Jessie made for Mattie. Mattie was able to do some great exercises and with Anna's help she was able to help Mattie put his hand to his mouth. In addition, Mattie has a new development. He can rotate his ankle on his right leg, and he can also lift up his right leg. If this is not the picture of hope and determination, I don't know what is! I introduce you to the unstoppable Mattie Brown!

I also want to thank Kathie Stoltzfus, Mattie's former occupational therapist, for consulting with Jenny and Jessie on activities that they can do to get Mattie to appropriately use his body parts. Kathie really understands Mattie and if anyone can come up with activities for him, it will be Kathie.

After the transfer back into bed, Mattie took a nap for about two hours. During this time, we had a visit from Jerry and Nancy, our favorite volunteer duo, and then Dr. Synder came by to check in. We spoke with Dr. Synder about some of the questions we have about how to proceed with Mattie's chemo treatment. On November 25, Peter and I have a meeting with Dr. Toretsky and Dr. Synder to discuss post surgery treatment options.

Today I received a lovely e-mail from Lesley, a good friend of my sister-in-law's, that I would like to share with you. Lesley wrote, "I was struck when looking at your picture of the blankets on Mattie. I remember Max being wrapped in those when he was first born and was put in my arms. It seems fitting that Mattie's bionic limbs are wrapped in the same cloth that is given to newborns. The intensity of which you are functioning between lack of sleep, watching his food intake, as well as bowel movements are challenges that all mothers can comprehend at one time or another. The difference is that you do this work for your six year old while maintaining his dignity. This is a balance that most could not meet. Mattie's ability to handle the 12 horrific things that have entered his body and the desire to have you nearby just speaks to a relationship/bond that most humans never experience." I agree, it would be very easy to want to baby Mattie, but finding the right balance of care and yet independence is a challenge. But Lesley's comment about the baby blanket, also caught my attention. I remember coming home from the hospital after delivering Mattie with many of these little blankets. I had no idea I would be seeing these blankets again on Mattie in this context. After all who would want to imagine this nightmare happening to their baby?

On the electronic front, I want to thank Kim, Brian Boru, Karen, Emily W., Liza B., and Grammie for your e-mails and e-cards. As I sign off for the evening, I am happy to report that Mattie seems comfortable and is watching his new found favorite TV channel, Animal Planet! It appears that the Fentanol patch that Bob prescribed today is working wonders for Mattie, and I hope this is the start of a good night for us.