Monday, April 13, 2009

Monday, April 13, 2009

Mattie's Quote of the day: "I can be mad at you, and I can also be snappy, but don't forget I always love you!"

Quote of the day: "Giving frees us from the familiar territory of our own needs by opening our mind to the unexplained worlds occupied by the needs of others." ~ Barbara Bush


Mattie had a hard time falling asleep on Sunday night. In fact, I couldn't get him to close his eyes until 1am. Needless to say, I am exhausted today. Mattie slept until noon, and even when he awoke he was groggy and edgy most of the morning. I got up at 6:40am, because I know how it works in the PICU. Someone has to be up and mobilized in the room by 7am, because people start popping in and out of the room at that time. When Mattie is sleeping, I do not want him to be disturbed, so I go through great efforts to serve as the interference when others enter the room.

I saw Dr. Abu-Ghosh today prior to Mattie waking up. She asked me how Mattie's eating was going. I told her his appetite isn't back to normal yet, mainly because he isn't feeling well. She knows how Mattie is as well, and told me she was thinking about the possibility of Total Parenteral Nutrition (TPN). TPN is the practice of feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas containing salts, glucose, amino acids, lipids, and added vitamins. However, she too recognized that once his counts come back, he most likely will start eating on his own. I told her of my hesitance to start TPN especially since we are so close to the end of Mattie's chemotherapy regimen. So today one of my many goals was to get him to eat something, anything!

Mattie's Absolute Neutrophil Count is continuing to rise, it is 160 today, compared to 80 yesterday. We need a count of 250 or higher to be discharged from the hospital. Mattie no longer has a fever, however, he needs another blood transfusion. His hemoglobin level is low. Because Mattie was scheduled to receive MTP-PE today, the transfusion will be given tomorrow since Dr. Abu-Ghosh did not want one medication to complicate the administration of another.

When Mattie woke up, I gave him oatmeal. But he took a few bites and then stopped eating. Then he wanted applesauce, but that too, did not taste right. After he attempted to eat breakfast I then had to premedicate Mattie for his MTP-PE administration. He wasn't wild about taking Atarax (an antihistamine) and Tylenol, but he did comply. We then watched a video I brought in for Mattie yesterday entitled, "The Easter Bunny is coming to town." It is narrated by Fred Astaire and it is a classic. Mattie loves it. It engaged us for about an hour. After the movie however, things started to go downhill. Mattie could not figure out what he wanted to do today. He is surrounded by a ton of crafts, toys, and fun things, but none of them interested him. I tried providing him with a lot of ideas, and then offered him the opportunity to name something he wanted to do. What he wanted was someone other than myself to play with. However, his usual buddies weren't here today such as Linda, Meg, Jenny, and Jessie.

Mattie was getting very agitated with me and I tried my best to remain calm, always listening, and receptive to his suggestions. But there came a point where he was treating me very meanly. At which point I told him I was unhappy with his behavior, but was willing to talk with him to figure out something to do. Literally we spent two hours in a show down. Toward the end of the show down, he refused to talk with me, and I just remained silent until he was ready. While he was giving me the silent treatment, Katie, his wonderful HEM/ONC nurse was administering MTP-PE. Also Mattie's doctor, Dr. Synder, came to visit us as well. When Dr. Synder left, Mattie began to talk and he said he was hungry. That broke the stand off between us. He wanted his old standby, bread and butter. So as I was preparing a plate for him, he said he wanted to get back into bed and wanted the blankets on him. This signified the formation of a problem. Mattie never wants to go to bed, much less wants to be covered up. So I knew that Mattie was beginning to have a negative reaction to MTP-PE. I alerted Katie. Sure enough as Mattie was eating, he started to shiver and his teeth were chattering. I got Katie, who went to retrieve the Demerol.

Meanwhile, while waiting for the Demerol, I covered Mattie with four blankets and had my arms wrapped around him holding him tightly since he was shaking like a leaf. Katie arrived with the Demerol in minutes and began pushing it through Mattie's central line. We knew it was beginning to work when Mattie asked that I pause his Scooby Doo movie (that I started while he was eating his bread). In the midst of getting his Demerol, Mattie started talking to Katie and I about mother hens. He said that mother hens use their wings to keep their babies warm. He said that my arm was like the wing of a mother hen. But the real kicker was on some level Mattie knew that his two hour showdown with me was taxing and very upsetting. He then said to me very sincerely and totally unsolicited, "I can be mad at you and I also can be snappy, but don't forget I always love you." I gave him a hug and said I already knew that, but it was nice of him to let me know.

Pretty soon after that Mattie fell asleep from the Demerol, and Peter called me to tell me that he was on his way over to the hospital to help me. That was very appreciated. I am sending Peter home tonight too, because I know he will be able to give me night breaks later on in the week. Needless to say, Mattie's afternoon nap gave me a minute to recharge emotionally.

We want to thank the May family for a wonderful dinner! Peter and I love ham, and it was nice to have a homecooked dinner. Mattie loved the watermelon and the bread, and I very much appreciated the chocolate covered strawberries! Mattie looks forward to opening the gift that the May family gave him! We want to thank the May's for their support!

I would like to share two e-mails with you. The first one is from my mom. My mom wrote, "I read the blog and was encouraged by Mattie's resilience and his zest for a normal life as he fought off the horrendous complications of his illness. He doesn't give up on himself and neither will we. No matter what the journey ahead demands, he has the courage and determination to face it and it has steeled my resolve to match his fortitude measure for measure. He sets an example for all of us to follow and it is ironic that we are being taught about how to tackle the challenging events in life by a little boy, just 7 years old, but with the heart and spirit of a wise man. It's truly amazing and Mattie, from his track record, will NOT GIVE UP and NEITHER WILL WE! Easter Monday is a very good day for reflecting that we have already come far in our journey to restore Mattie's health and with GOD's help we will go all the way!!"

The second e-mail is from my friend Charlie. Charlie wrote, "Easter Sunday was not what you hoped it would be but it clearly was a good day for Mattie in spite of his readmission to the hospital. It was full of fun and laughter and attention of caring friends who gave of their time on the holiday to make his day brighter. Many thanks to all of them for making this day really special and memorable for Mattie, Vicki and Peter. It sounds as though Mattie got as many eggs on his various hunts as several children working together might have accomplished. On this Easter Sunday a time of resurrection, reflection and love in Christianity, I offer the lyrics to an old song called, "I believe"..."

(Erwin Drake - Irvin Graham- Jimmy Shirl - Al Stillman)
I believe for every drop of rain that falls
A flower grows
I believe that somewhere in the darkest night
A candle glows
I believe for everyone who goes astray, someone will come
To show the way, I believe, I believe
I believe above a storm the smallest prayer
Can still be heard
I believe that someone in the great somewhere
Hears every word
Every time I hear a new born baby cry,
Or touch a leaf or see the sky
Then I know why, I believe
Every time I hear a new born baby cry,
Or touch a leaf or see the sky
Then I know why, I believe.