Holy Saturday

Saturday, April 11, 2009

Quote of the day: "Do not let what you cannot do, interfere with what you can do." ~ John Wooden

On Friday night, Mattie fell asleep at 10:30pm. He was up periodically throughout the night going to the bathroom, and also because he was upset a couple of times. So I got up to comfort him and to help him fall back to sleep. This morning he slept in, but when he woke up, I noticed he and his bed were all wet. I assumed he had an accident. Mattie assured me that wasn't the case. He then noticed that it was his central line cap that was leaking IV fluid. He diagnosed his own problem. So I helped him up and changed him and then we called in Laura, his HEM/ONC nurse. Though Laura is new to the HEM/ONC team she is an excellent nurse. In fact she is the nurse who helped me on the floor the day Mattie was having a negative reaction to MTP-PE. Laura had the where with all to preorder Demerol which helps to counteract the negative reaction to MTP-PE. In the past, Demerol was never prefilled, but Laura wanted to play it safe that day. Since that incident, preordering Demerol for Mattie is NOW standard practice.

Laura came in and changed Mattie's central line cap, and she was very sensitive to Mattie's agitated state. She worked very well with Mattie, and she had her hands full today because she had to spend a lot of time in our room performing Mattie's second platelet transfusion. Mattie had his first platelet transfusion on Friday morning, but his platelet level was even lower today than it was on Friday prior to the first platelet transfusion. I spoke with Dr. Abu-Ghosh today about why Mattie's platelet count continues to drop. She provided me with one of two explanations. Sometimes the bag of platelets from the blood bank does not have a concentrated level of platelets, or enough to bring Mattie's counts back up, and therefore a second bag of platelets is needed to stabilze the level. The second explanation was that Mattie's neutropenic fever can chew up the platelets that are coming into his body through a transfusion. So Dr. Abu-Ghosh is monitoring Mattie closely. She ordered blood to be drawn from Mattie right after the transfusion to see what his platelet count was, and then he will have a second blood draw 12 hours later to see if he is maintaining the platelet level.

While Mattie received platelets, he basically had to be connected to a blood pressure cuff, which took his blood pressure every 15 minutes. Which is why Laura was bouncing in and out of the room this morning. Laura was also training a new HEM/ONC nurse, and Mattie put both of them through their paces. Mattie and I did various things together, such as playing hidden pictures on the computer, reading, and even watching the new Scooby Doo movie again that Virginia brought him on Friday. However, Mattie just couldn't get comfortable. He was edgy and was unhappy the playroom wasn't open. Mattie's good buddy, Zachary, was going to come to the hospital today to spend part of the day with him, but I quickly assessed this morning that this wouldn't be a good idea. First of which Mattie's white blood cell counts are zero and he has no immune system at the moment, and second Mattie just seems weak and unhappy. Both of these facts made a convincing case not to have a play date.

We had a lovely visit this morning from Miki, one of our favorite HEM/ONC nurses. Miki has helped me through many difficult moments in the PICU. Miki was one of the nurses who celebrated Mattie's birthday with him. In fact Miki was taking pictures throughout the party. Today Miki brought in a photo album she created for Mattie of the party. It was such a special and thoughtful gift, on top of the gifts she already gave Mattie on his birthday. Mattie literally said, "thanks Mik for the great album." It was very sweet, and I think Mattie really enjoyed reliving aspects of his great party! The gift of photos meant a lot to me, because it captured a happy time, in a sea of many unhappy days. But again this speaks to the caliber of our HEM/ONC nurses. They go above and beyond their job descriptions every day.

At around 2pm, I called Peter at home and I told him Mattie really wanted to see him. I think my level of "fun" had ended, and he needed new blood. Mattie was looking forward to building a lego with Peter. When Peter arrived, Mattie showed Peter the photo album and then jumped right into building. At which point Peter sent me home.

When I got home, I went right to bed to take a nap. I slept for at least three hours, and woke up in a daze. Fatigue is impacting my out look on Mattie's situation. My dear friend Karen, who I grew up with and have known since 6th grade, e-mails me back and forth multiple times during any given day. Though she lives in New York City, she supports me in so many ways. Today she e-mailed me and reminded me about a place my mom and grandmother used to take me to in the summers, Sorrento, Italy. We had a lot of family in Italy and I was lucky enough to spend my childhood summers there since my mom was a teacher and had the summers off. My e-mail with Karen today gave me great pause. Because I reflected on how my childhood was so different from Mattie's.

Normally when I am home I can relax, but today my mind went into overdrive. I felt a great deal of sadness about Mattie, how he may never see places like Sorrento, and worst of which he may not have a future. Certainly no one's life is guaranteed, but living with osteosarcoma, seems to really stack the odds against you. What an absolutely horrible disease, and there are days I wish I would wake up and find out I was sleeping through a nine month nightmare. No such luck!

Peter and I have checked in periodically by phone and he told me that at 4:30pm, Mattie took a nap. Naps for Mattie are UNHEARD of. He only naps when he is sick and weak. I have no idea what tonight will hold for Mattie or Peter, and though my body is home, my heart and mind are with both of them.

I would like to end this posting with two e-mails I received today. The first if from my mom. My mom wrote, "The trials and tribulations that Mattie has endured were epitomized by all the suffering he went through on Good Friday. It was very symbolic of what Good Friday signifies for humanity. It deeply affected me for it was a translation of events that happened 2000 years ago to a modern day setting in a hospital in Georgetown. But as a good Christian, I remember that Jesus' suffering was followed by the Resurrection and it brought me hope that Mattie, because Jesus will NEVER abandon him, will after all the suffering and pain have a RESTORATION of good health with the help of GOD. I continue to marvel at the loyalty and commitment of your friends throughout this long journey. Never once have you been left to your own devices. There has always been a faithful friend to give you comfort in one form or another."

The second e-mail is from my friend Charlie. Charlie wrote, "Another rough day weathered. As you said, it is the holy season for both Passover, also known as the festival of freedom and Easter, the holiday of rebirth. Passover means more than just the freedom of those in physical slavery but also freedom from other kinds of slavery as well: poverty, ignorance, indifference to the suffering of others, etc. I would add to that freedom from illness so that life may be lived and enjoyed. I hope that this season of spring, rebirth and renewal brings strength to you and to Mattie so that you can face the challenges still ahead and come out well on the other side. Many thanks to those who gave of their time on Good Friday to help smooth out a difficult day for Mattie and to those who will give up their holiday weekend to do that on Saturday and Sunday. Here is the video for Stand by Rascal Flatts about finding the strength to overcome adversity."

I love the empowering words reflected in the video: Determination, Passion, Courage, and Grace!
http://www.youtube.com/watch?v=vm8711y6ILU&feature=related