Friday, November 21, 2008

Friday, November 21, 2008

The Message of the Day: FATHER KNOWS BEST!

Peter had a long talk with Mattie this morning about the need to give me some time to myself when I need it. He explained to Mattie that if I get sick, then our family would have a big problem. A message delivered from a dad to his son has a big impact! Mattie had a good day, and transferred to his chair very well. While in the chair, we played a lot on the computer. We did matching and shape games, and even read about the life cycle of a frog as well as other interesting science facts (e.g., how fish breathe). Thank goodness for the internet, it really puts the world at your finger tips, which is even more crucial when chair bound. Linda spent some time with Mattie today and he enjoyed building a dinosaur with her. The chemistry club came by as well and created a volcano right before our eyes, made out of detergent, baking soda, and vinegar). I took a picture of Mattie typing on the computer today with his powerful left leg (aka George! Bob and Mattie named all his limbs today. It was a riot!). In addition, Linda captured Mattie and I watching the chemistry club's experiment.

Mattie has been on a cheese stick frenzy. Tricia (one of Mattie's favorite HEM/ONC nurses), joked with him that he was going to turn into a cheese stick from eating so much cheese. I am just happy he is eating something. The nurses on our 10 day stay at the hospital were just incredible! Last night I went out of Mattie's room to get some ice, and I passed many of Mattie's nurses in the hallway, both PICU and HEM/ONC included. I stopped to chat with them, and they truly are our family away from home. We are very lucky to have such wonderful nurses caring for us, who responded immediately to all of Mattie's pain management issues. It was a long 10 days, but what a fine group of women we were surrounded by.

This afternoon, Bob came to visit to do a dressing change for Mattie. If you recall, Mattie's last dressing change was a fiasco. Mattie was yelling at Bob and telling him he was the worst person in the world. Today, we gave Mattie some medication for anxiety and pain before Bob arrived. We felt he had been through a lot this week, and needed nothing else to further traumatize him. Bob and Mattie have a great rapport, and I wish I tape recorded their dialogue today. Linda, Tricia, and I thought it was an absolute riot! Bob named all of Mattie's limbs. It was an excellent distraction for Mattie, just so you know, Mattie's legs are called Steve and George, and his arms are Sam and Harold. Bob started with Mattie's right leg bandage. Mattie handled this quite well, and checked out his scar. The next thing Bob did was brilliant. I do believe that Bob was giving his sound medical opinion, but from a psychological perspective, Bob energized Mattie. Bob told Mattie that his leg looked great, and was really healing. Bob then asked Mattie to lift up his leg (since Bob saw the picture of Mattie raising his leg on the blog, he knew he could do this!) without the immoblizer on. Mattie did it with no problem. Bob then told Mattie that he is doing so well, that he no longer needs to wear the immobilizer. Now this was a shock to all of us, since Bob prepared us for a 2-3 week duration for wearing the immobilizer. The power of suggestion is a fascinating thing to observe. Mattie soaked up all of Bob's comments today. I did not understand just how much was absorbed until I got home tonight. Mattie's arm dressing change was a little more complicated, but still went beautifully! Before Bob changed Mattie's dressing today, he asked Mattie if he wanted to go home. Mattie was indifferent. Bob asked Mattie again after the dressing change was successfully complete, and Mattie definitively said YES. Interesting, no?!

Bob called me before he came to the hospital. He told me that medically Mattie could go home today, but he wanted to make sure I was comfortable with taking care of Mattie. So he was open to us staying longer at the hospital. However, Bob has been following the emotional changes Mattie has made this week at the hospital, and he explained to me that a change of scenery may actually help with this intense behavior we are experiencing. Earlier in the day Peter told me that he felt Mattie was ready to go home, and certainly we needed to get out of the hospital for our mental sanity. But I was uncertain about everything! When Bob asked Mattie a second time whether he wanted to go home, and Mattie emphatically said yes, I had to respect that. Dr. Synder came to visit Mattie and I and she observed me transferring Mattie. Dr. Synder was concerned about me and understood my hesitation. I so appreciate her support! But in the end, Father Does Know Best! Peter was right, Mattie was indeed ready to go home. Keep reading to understand why I am saying this!

We were discharged from the hospital today at 7pm. Anna (Mattie's PT) helped me with strategizing how to get Mattie in the car and gave me pointers about tranferring Mattie. Linda and my parents helped us get packed up and we really needed two cars to do this. Thanks Linda for staying late to help us! Mattie is unable to get into Peter's Explorer, but he can fit into my Passat, because my front passenger seat can be pushed down flat, and while Mattie is sitting in the back seat, he can prop up his right leg on the passenger seat. Needless to say, I was very nervous about leaving the hospital. The car transfer went fine, even though it was freezing outside and dark. When we got home we unpacked a bit, and Mattie devoured three pieces of pizza. We want to thank the Frye family for all the wonderful pizzas. Not a piece is left! Mattie loved the card too. After Mattie ate, he wanted to be transferred to the bed. My parents helped set up the bed with us, and purchased a special foam pad for Mattie's mattress, since he has the start of a bed sore. In any case, what I saw next simply amazed me. Mattie basically helped himself out of the wheelchair, and stood up. That is right! He stood up WITHOUT assistance. What is with this kid?! I am still shocked, just after 10 days of major surgery. We spotted him and helped him into the bed, but this transfer was a breeze! I hope I don't jinx anything by writing this, but I am deeply impressed and in awe with Mattie. The ironic part is before Bob left the hospital today, he said that Mattie was progressing so well, that he thought that the next time Mattie went back to the hospital, he would be walking in rather than being in a wheelchair. Wow, I still can't get over that either. What can you say about Bob? How do you thank a person who has made your son cancer free? I don't know, words doesn't express it, but today he performed his third miracle (after the two surgeries that is). He empowered Mattie to believe that his leg is strong enough to stand and walk on!

So we are settling into being home. I still have unpacking to do. But we are thrilled not to have our midnight, 4am, and 6am vital checks! Dr. Toretsky also came to visit us tonight, and he gave me an update of all the oncologists he has contacted around the country for opinions on Mattie's case. All this information I find very reassuring. These opinions will be discussed at a tumor board meeting on monday at Georgetown, and then on tuesday, Peter and I will meet with Drs. Toretsky and Synder to hear the outcome of the tumor board meeting in order to make the big decision about Mattie's chemo options post surgery. As I sign off tonight, I want to thank all of you who stood by us these past 10 days, and throughout this journey so far.