Monday, September 29, 2008

Monday, September 29, 2008

Mattie started off the day on a happy note. Miki, Mattie's nurse, told me that his ANC was 520. It is amazing how an absolute neutrophil count can jump from 32 yesterday, to 520 today. But I am not complaining. We were very excited because we knew it meant that he could go home. However, the next shoe dropped. We learned that Mattie's platelet count was low, at 24. At a count of 20, Mattie would be required to have a platelet transfusion. Because the doctors knew Mattie was scheduled to go on a road trip on tuesday, they did not want to take any chances, and decided to give him a transfusion. My favorite topic, transfusions! It seems like we can't get out of the hospital lately without a transfusion.

Our family friend, Margaret was visiting us this morning while all of this was going on. Margaret was Mattie's first preschool teacher at RCC. Margaret arrived bearing gifts. She brought Mattie a beautiful pumpkin that she picked on her trip to NY. She also brought Mattie some fabulous books, a tasty pretzel, and a great CD of pictures taken from Mattie's recent outting to the RCC playground. Margaret had the opportunity to meet Jenny. Jenny came up to the PICU with a fabulous art project. Jenny always has a way of coming up with a project that captures Mattie's attention. Jenny helped Mattie create his own pumpkin out of tin foil, tissue paper, and glue. By the time they were finished, it looked like they made a paper mache pumpkin. It was a great project, and much easier and less time consuming in comparison to paper mache. This pumpkin seemed very happy next to Margaret's pumpkin! Before Jenny left, she also helped Mattie start the building of a haunted house out of packing boxes. I never knew how versatile packing boxes could be. Mattie left the haunted house at the hospital, with the plan on working on it next week.

After Jenny left, Margaret played with Mattie. They kept adding to the haunted house, and then they did some Highlight's hidden pictures together. Margaret and I had lunch together, while Mattie took a computer break. Mattie is now very focused on the computer. Thank you Mary! While Margaret and I were eating and chatting, we were observing Mattie and watching the platelet transfusion taking place. To our amazement, a bag of platelets looks like apple cider, not a blood product color. Mattie received 3/4 of the bag of platelets, when Margaret and I noticed Mattie was itching. It went from light itching, to intense itching. Margaret then said she noticed Mattie looked red. I literally jumped out of my chair. Margaret and I observed Mattie turning red like a lobster, and developing huge welts on his body, running from his head to his toes. Some of the welts were walnut sized. Margaret sat with Mattie, while I ran to get the doctor. Thanks to one of the resident's we know, Dr. Jung, she handled this smoothly and effectively. She got Dr. Myers and about three other residents. The room was stuffed with people. Mind you Mattie was still sitting on Margaret's lap with his tubes wrapped all around her. Margaret handled all of this very calmly, which wasn't easy to do, since Mattie was sitting on her, and we were all staring at Mattie. While staring at Mattie, I could observe his nose and lips turning white, and then he literally looked like he passed out. He was still answering questions and so forth, but it was frightening to see him energized one second and then practically sleeping in the next second. Dr. Myers had an intensivist come in too, to confirm his assessment on what to do. They both decided to give Mattie Solumedrol (a steroid) and Atarax (an anti-histamine). While this was being administered we were watching him like a hawk. My parents came into Mattie's room mid-allergic reaction, and they were just as perplexed as Margaret and I. But we all clearly were on the same page, we were hoping for the medicine to help stop the blood reaction. One thing is for certain, Mattie is clearly sensitive to certain things, such as benedryl, low dosages of Ativan, and now platelet transfusions. I was impressed though with how Dr. Myers handled all of this, and was super attentive until the crisis was over. It is funny, I spoke to Ann today and also bumped into Dr. Cantor (a resident) and they both said basically the same thing. Nothing about Mattie is boring or typical! The day was too calm, and we needed to shake some excitement into it. Needless to say, I am ready for a boring day! Bring it on.

Mattie and I appreciated Margaret's visit. They have such a great rapport with each other, and this was most evident when Mattie was going through his blood reaction and was curled up on Margaret's lap. Fortunately, Mattie slowly started to feel better as the medicines kicked in. Then within an hour, he was back up, and somewhat energized. Mattie had a visit from Kathie, his OT. Kathie brought us a wonderful dinner (which I was eating while walking the halls of the hospital, thanks for the fabulous olives!), and a fantastic book about identifying objects in each picture which do not belong. Mattie found this book fascinating, and he got engaged and playful with it. After this, he and Kathie went for a walk in the hallways, until they bumped into Linda and a volunteer musician. While Mattie and Kathie were together, I started packing up our room. I feel like I live my life out of a suitcase sometimes. Thank you Kathie for the visit, the wonderful books, and the garden stone. We can't wait to create it!

It is a pleasure to be home tonight. Of course we can't get too comfortable because we are on the road to NY tomorrow. I have to give packing great thought, since I have a ton of medications to take for Mattie. In addition, I noticed that tonight he looks white as a ghost. It is that sickly white, that I haven't noticed before, but something I will keep an eye on.

We received two other special gifts today. One came from Ignacio at Voxiva Peru. Ignacio wrote a beautiful letter to us, in which he described a time when he was a child and was very sick. His Doctor introduced him to the game of chess to occupy his time and Ignacio fell in love with the game. Ignacio looks upon the time he learned chess very positively and wanted to share this special game with Mattie. Ignacio sent Mattie a beautiful hand carved chess set, and we will reflect on Ignacio's beautiful story, everytime we play the game. The second gift, is we had a visit today from Dr. Toretsky. Dr. Toretsky brought us some homemade ruggala, which he made with his daughters. Apparently Mattie thought this was the best medicine, because he demolished a whole cookie. It was wonderful to see Mattie eat something and actually enjoy it.

On the electronic front, thank you Kim, Charlotte, Emily W. (Happy Smile Week), Karen (Happy Pumpkin Day), and Susan for your wonderful e-cards, and JJ, Barbsie, and Wayne H. for your e-mails. Keep us in your thoughts as we pack up and head to NY on tuesday.