Monday, April 27, 2009

Monday, April 27, 2009

Quote of the day: "Life is a continuous exercise in creative problem solving." ~ Michael J. Gelb


We all had an interesting night of sleep on Sunday night. It has been 90+ degrees here in Washington, DC, and our home has a way of absorbing the heat. Our complex hasn't turned on the air conditioning yet, since it is only April. However, it was almost impossible to sleep inside an oven last night! Despite getting Mattie into bed at 11pm and attempting to help him to unwind with bedtime stories, he was still up until 1am. His sleep and wake cycles have truly been affected by living life in a PICU. I assume eventually we will get him back on track, but in the mean time, it makes for very long days. Mattie was up multiple times during the night to use the bathroom, so I felt like the walking wounded today. I spoke with Dr. Synder, Mattie's doctor, about the IV hydration at night. As a recap Mattie needs IV hydration because he has an electrolyte imbalance as a result of intense chemotherapy. Dr. Synder told me today that if I wanted to try to give Mattie IV hydration by day when we are home, then he wouldn't need to receive it at night. Since Mattie and I spend our days at home when he doesn't have a clinic appointment, I may try this to see if it makes life any easier while we are home at night. We all deserve a night or two of uninterrupted sleep.

Mattie arrived at clinic today around 11:45am and we did not get home until around 6pm. So it was another full day. While in clinic I had the opportunity to talk with Dr. Synder about Mattie's central line. I have been concerned that after chemotherapy is over, and with the lung surgery, that Mattie's central line (which is a long, hollow tube made of soft, rubber-like material called silicone, with an opening called a lumen. This catheter is commonly referred to as a central venous catheter because it is inserted into the large vein leading directly into the heart) was going to be removed. This would be a huge problem, because how would Mattie receive his MTP-PE each week through September, have blood draws, and get IV fluids without it (sure he could have an IV placed in his arm each week, which involves a needle, but Mattie is very scared of needles)? Dr. Synder understood my concerns and this is something Peter and I will need to discuss with Mattie's lung surgeon. What was determined today is that Mattie will head back to the clinic on Wednesday to be admitted to the hospital for a Methotrexate infusion. We kept to this aggressive schedule, because our goal is for Mattie to be healthy and present for his walk. Mattie's last round of chemo will take place on the week of May 11, after the walk.

Mattie had a good time playing with Jessie today. They started to create a shark and a whole set for the shark to play in, however, while they were playing Mattie was receiving MTP-PE. Typically Mattie has a reaction 45 minutes to an hour post-MTP infusion. But today it did not take that long. I would say within minutes of the hour long infusion, Mattie started to shut down. He started to put his head on his wheelchair. He was fighting falling asleep, and told Jessie that it was really his shark (sitting in his lap) that was falling asleep and not really him. But Jessie and I knew better. We wheeled Mattie into a clinic room, and I tucked him into bed. Mattie literally took over a two hour long nap. He was asleep the whole time and during which time he developed a low grade fever. Mattie had the same reaction to MTP-PE last Monday. The fever was a first for Mattie last week, but this week Mattie repeated the same reaction. While Mattie was sleeping Jenny and Jessie came in to visit with me. They watched Mattie for a little bit, while I went to get hot tea. The clinic was its usual state of COLD. Thankfully I always bring jackets and a blanket for Mattie. We needed all these items this afternoon. I truly appreciate Jenny and Jessie's support, especially when the day in the clinic goes on forever. The irony is, I rely heavily on Jenny and Jessie while in clinic. The climate in the clinic is different from the PICU where I have all our HEM/ONC nurses who look out for us. This is an amazing group of nurses, and it is hard to replicate their compassion and dedication. So while in clinic, I feel a bit more isolated, and when in doubt I always know that Jenny and Jessie are there to assist me.

When Mattie and I got home, we set up a few fans in our living room, because it was down right oppressive inside. We had two temperature extremes today between the clinic and our home. Mattie and I played with his suspension bridge, and then Peter came home from work, and we all had a nice dinner together thanks to the Keefe family. Thank you Debbie for the wonderful flank steak and asparagus. I love the fruit too! Mattie ate the grilled hot dog too. Thank you for sharing what you had for dinner with us, it was like we were part of your family tonight. I also want to thank Peter for another beautiful letter. His letters mean a lot to me.

Up ahead tonight, Peter and I have a central line dressing change to perform. We just did not have the energy to undertake that on Sunday. Mattie and I have an unstructured day tomorrow and then in the evening we will see my parents who are arriving from California.

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "Sunday's blog seems to have a duality to it. On first read it is pretty positive with only two administrations of chemotherapy to go but there is the chest surgery yet to face and then the long term wait and see with ongoing scans. It feels like wistfulness in the writing for the time that was "lost" in the blur of treatment. One moment all was well with Mattie taking tennis lessons and the next you were in another "world" of tests, scans, treatments, consults, etc. Now almost a year has gone and there is little sense of where except for the markers of things missed: a year of school, a new class of graduates, etc. How and when do you make the transition back to that world? I don't know, but I suspect each family's passage is different and I hope you will allow us to accompany you on that journey as well."