Monday, September 8, 2008

Monday, September 8, 2008

We were looking forward to leaving the hospital today, but it is now 8:30pm, and we have just been told that Mattie's methotrexate levels are still too high to be discharged. Mattie has been hoping to leave the hospital since saturday evening. The perplexing part of this though is his methotrexate numbers keep fluctuating. Normally, the methotrexate level in Mattie's blood is expected to decrease over time, because he is being heavily hydrated and the drug is therefore being excreted from the body. This morning, Mattie's methotrexate level was 0.12. It was our hope that by tonight it would be 0.1 or lower. However, it went up to 0.23. This is the second time in 48 hours that this anomaly has occurred. We can not be discharged from the hospital until his level is at 0.1 or lower. So we wait. Now that may not seem like a big deal, but to a six year old who was hoping to leave the hospital since Saturday, this is devastating. He was very upset tonight, and spent a good part of it crying. Peter and I feel a bit powerless, because we can't understand the fluctuation, and we are not getting a solid explanation for this from our medical team either.

Despite this set back, Mattie had a good day. Linda, Jenny, and Jessie were back, and they seem to know how to bring a smile to his face. Mattie handled x-rays today beautifully. He is getting to know most of the techs at the hospital. There is one tech, Jerrold, who particularly looks out for Mattie. He met Mattie today at the x-ray machine, even though he primarily does ct scans. Mattie's x-ray did not show anything unusual, that would explain his limping. He continues to walk gingerly today, and we are keeping an eye on this. Mattie has an appointment with Dr. Bob on thursday, to assess this leg situation. Mattie visited Jenny and Jessie in the Lombardi Clinic today. He had an absolute ball with them, and he designed his own caterpillar and the caterpillar's home. While Mattie was having fun, Alison came to visit us, brought us lunch, and encouraged us to have lunch outside and helped us forget our troubles for some time. We all ate together, and Alison and I had a chuckle about some of the lighter experiences I am having in the hospital. Thank you Alison for your wonderful sense of humor, and for understanding how I am feeling even when I may not be expressing it too succinctly. Thank you also for the wonderful sensory gifts today and the happy meal. We are all fighting for turns playing with these squishy items!

Later on in the afternoon, Linda came in and together we worked on changing Mattie's dressing of his central line. The former method we used to clean Mattie's central line was causing him to develop dermatitis, so we needed to develop another way, that wouldn't irritate his skin. We were uncertain how Mattie would take to this change, but to our surprise, Mattie pulled off the old dressing himself (mind you it is very sticky and that usually causes him great pain) and he was VERY patient as we walked through the new changing procedure. We were so proud of him, and we were hoping that the reward for this would be his discharge papers.

During the evening, Frank Bires came by and dropped us off dinner from Panera. Much thanks Bires family for taking care of us, and Frank, thank you for walking several laps around the fifth floor with me and Mattie. It was nice to have your company. On the electronic front, thank you Margaret, Kim, Karen, Susan, and Bunny for your great e-cards, and thank you Grammie, Zachary, Rev Rosemary, Goli, Gail, Janie, and Barbsie for your e-mails. All this support is greatly appreciated. Also, thank you Ann for checking in with us each day and your willingness to drop whatever you are doing to help us. Peter and I are quite tired, so we are signing off for now. As Scarlett O'Hara would say, "Tomorrow is another day!"