Quote of the day: "Where the determination is, the way can be found." ~ George S. Clason
We had a full agenda for Mattie last night which included taking his vitamin supplement (which is like eating chalk!), taking a bath, and performing a central line dressing change. Mattie did two out of the three! After taking his vitamins and having a modified bath, Mattie had it. He was exhausted! He wanted to go to bed and it was ONLY 10:15pm. I was shocked. Before Mattie could sleep, he needed Morphine to manage his stomach pain. However, as soon as he received the Morphine and was connected to his IV hydration, he literally fell asleep and we had to wake him at 10am today. We are trying to get Mattie back on a more normal sleeping pattern, but I have a feeling it will take some time to accomplish this, especially since we head back into the PICU within two weeks for surgery. How on earth did it become June 1? Here I am thinking I have so much time to prepare Mattie for this surgery, but before I know it, it will be June 15.
Peter stayed with Mattie last night so I could have another night of sleep. However, Peter and I both find that our sleeping patterns have been affected by living in a PICU. After 11 straight days of sleeping in the hospital, my body naturally wakes up every 90 minutes to two hours (in the hospital you are always on hyper alert, because someone is always coming into the room, and if not, then the IV machine is usually beeping and needs attention). In addition, I can't fall asleep until after 1am. Despite being home, getting much needed sleep doesn't come naturally to us. I know this is not a phenomenon unique to Peter and I. I remember Dr. Shad (the director of the ONC/HEM pediatric practice at Georgetown) telling me that there are well documented consequences to living life in a PICU, and this can be referred to as intensivitis.
Peter helped me this morning with Mattie. Peter woke Mattie up at 10am. Peter helped Mattie with breakfast and administered him his GCSF (a white blood cell growth factor). This was a great assistance to me, because I still had to get Mattie physically ready to go to the clinic and pack up lunches for us. Before heading to the hospital, we dropped Peter off at his office and then we were off. As luck would have it, we actually found a parking space easily at the hospital today. Finding a parking space at Georgetown is almost like winning the lottery. I was thrilled about something which should otherwise be so simple.
When Mattie arrived in clinic, he was greeted by Jenny and Jessie. In addition, two of Mattie's buddies were in clinic, Maya and Jared. Many of you may recall Maya. She is 8, and has worked on many projects with Mattie in the past, such as a train and a rainbow ceiling tile. Today Mattie, Maya, and Jared recreated the solar system using a cardboard box, model magic, and wire. It was very creative and I was SO impressed with how well they were working together. What I observed today in the clinic is what I have wanted for Mattie for many months now. An opportunity for him to work with other kids in a group setting. To interact, socialize, play, and connect.
I snapped some pictures of the finished product and also of the play that Maya and Mattie acted out about space aliens. Maya was the narrator and "evil" alien, and Mattie was the "good" alien. This was a hysterical play or should I say a musical!? They used the melody from Yankee Doodle Dandy, changed the words, and added space themed words, like Mars to the song.
Left: Maya, Mattie, and Jared creating their version of the Solar System.
Right: Maya and Mattie acting out their Solar System play.
Left: You can see how wonderful their solar system is in this picture. In addition, look closely. Mattie is wearing a clear glove on his hand (sitting on top of the box). The glove has two eyes and a mouth, and represents the good alien. Inside the box, you will see a big silver tin foiled object. That is the moon! I also love the red curtains in front of the box. They used the curtains to create a stage like production.
Mattie is NO longer neutropenic. His absolute neutrophil count is over 2000! So Mattie will not need to receive anymore GCSF! Mattie received two things today, one was Pentamidine. Pentamidine is an antimicrobial medication primarily given for prevention and treatment of Pneumocystis pneumonia. The second medication Mattie received was MTP-PE. Within 30 minutes after the administration of MTP was complete, Mattie developed rigors, or intense chills and shaking. Mattie needed to receive Demerol today to combat the negative side affects of MTP. In addition, to the shaking, Mattie also developed a fever! I am getting so used to this routine that I refuse to schedule anything on MTP days. I just know that chances are Mattie will have a reaction. At around 5pm today, Peter met me at the hospital and sat with me until Mattie was stable enough to come home. Having Peter around helped greatly. Before Peter arrived Jenny and Jessie helped me. Jessie made up a bed for Mattie, and Jenny found a movie Mattie really wanted to see, "Milo and Otis." Mattie made it through half of the movie, and then passed out. However, Mattie would periodically wake up complaining of intense stomach pains. So we are now monitoring when the pain occurs. I will be keeping a journal over the next couple of days to try to see if food causes the pain, etc.
This afternoon, Dr. Synder, Mattie's oncologist called me at home to follow up on Mattie's reaction to MTP. She told me in the MTP protocol it says that it is natural to have a reaction to MTP up to 8 hours post infusion. However, if reactions occur after 8 hours (like they did last week for Mattie!), that the symptoms are not due to MTP. Though I appreciate the protocol, I highly disagree with this finding. MTP is still so investigational, and I think it needs to be tested out on more children to make such a definitive statement. Dr. Synder told me if Mattie develops the chills tomorrow, that I will have to bring him back to the hospital and have more blood cultures performed to rule out other possible causes of such a reaction.
We have a busy week. On Wednesday we head back to the hospital, because Peter and I will be attending a pre-surgical interdisciplinary team meeting. It is during this time we will be able to ask questions and seek feedback about Mattie's surgery. My newest concern is that Mattie is osteopenic. If his bones are weak, is a sternotomy still a good surgical match for Mattie? Cracking through the breast bone sounds down right dangerous to me considering the shape of Mattie's bones. I have many concerns about this surgery, and I have got to get a handle on it before I begin talking with Mattie about it. Mattie then heads back to the hospital on Friday for a FULL day of scans: a bone scan and CT scans. Next week doesn't look much better, since we will be at the hospital on Monday, Tuesday, Thursday, and Friday for check ups and more testing. A light week no?! Got to love our time "OFF!"
We would like to thank Katcher family for a wonderful Greek dinner tonight! Thank you so much for these treats and for your continued support! As I write tonight's blog, Peter is playing with Mattie. I admire Peter for his creative ability and energy. I know he is tired, but he never gives up, and is a very devoted Dad. I feel like I need a permanent break from playing. Who knew playing could be so hard!?
I would like to share a message from my friend, Charlie. Charlie wrote, "It is pretty clear that you are at the end of your endurance. When even the small things, like going out to lunch turn into events that need to be "managed" it is much too overwhelming. Sometimes it must just seem as if there are no good choices anymore here. Stay home and try to entertain Mattie while trying to eat or go out and still have a need to entertain and divert him away from home. Either one would be difficult enough but when you have no energy left, it must feel like looking up at Mt Everest from about halfway up. Up or down it takes more energy than you feel you have right now. It doesn't sound like June will give you any recovery time; all these tests leading up to the surgery and then having to deal with the aftereffects of that will take everything you have to give. Unfortunately it sounds like both you and Peter have fuel gauges that are registering empty right now. I am not sure what anyone can do to help but if there is, I would tell you to speak up as you have a support network that is willing and able to assist. Take whatever you are doing down to the bare survival minimum until this is over; anything that doesn't have to be accomplished by you, should be handed off if possible."
I would like to end tonight's posting with a song Charlie sent me today. The title of the song is "Every Day" and it is sung by Rascal Flatts. I dedicate this song to ALL of you who continue to read this blog, contact us, and support us. In many ways, as Rascal Flatts sings about, Every day you save my life!
http://www.youtube.com/watch?v=YQyQst3iBB4
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