Quote of the day: “Laughter is the spark of the soul” ~ unknown
Peter told me that Mattie awoke at around 3am today, but this time he was able to get Mattie back to bed. Jey, Mattie's 'big brother,' came by and gave Mattie a "circle of life" bracelet he made out of rubberbands. The funny part is Jey came by while Peter was in the shower and I was at home. But when Peter came out of the shower, Mattie told Peter all about this special bracelet and conversation he had with Jey. Jey always finds the time to come by to check on Mattie each day! Later in the morning, Meg and Laura (Linda's interns) visited Mattie and played with him. They helped Mattie create some wonderful new additions to his bi-plane. Also just so our growing toy lizard, who sits in a washbasin in our room, doesn't get lonely, Laura added a large green slimy worm to the mix. Mattie is loving it! So things continue to develop in Room 10! I arrived at the hospital around 11:30am. With me I brought a whole baking dish of cupcakes. I knew I wasn't going to be allowed back in the room without these pink cupcakes today. Mattie was thrilled to see the cupcakes and has literally ate about six in total so far.
Mattie's status is the following. His absolute neutrophil count is holding steady at ZERO! Today Mattie's hemoglobin level was very low, so he received another blood transfusion. This is the second one so far for this hospital stay. He is scheduled for a second platelet transfusion tomorrow. The pre-medications for the blood transfusion (pre-meds are given to avoid any negative reactions to the transfusion), knocked Mattie out. He slept for about two hours or so. While Mattie was sleeping, Evelyn came to visit us. She brought us a lovely lunch and dinner. Evelyn sat with Mattie for over an hour while Peter and I had lunch in the parent lounge and got a chance to catch up. Thank you Evelyn for the wonderful foods and the time to get out of the room together. Mattie loves the valentine and his heart shaped cookie! Thank you also for the wonderful homemade jambalaya and the Starbuck's iced tea! All of it was very tasty, and the fresh fruit is ALWAYS so appreciated. We are so thankful for your whole family's support.
Mattie's status is the following. His absolute neutrophil count is holding steady at ZERO! Today Mattie's hemoglobin level was very low, so he received another blood transfusion. This is the second one so far for this hospital stay. He is scheduled for a second platelet transfusion tomorrow. The pre-medications for the blood transfusion (pre-meds are given to avoid any negative reactions to the transfusion), knocked Mattie out. He slept for about two hours or so. While Mattie was sleeping, Evelyn came to visit us. She brought us a lovely lunch and dinner. Evelyn sat with Mattie for over an hour while Peter and I had lunch in the parent lounge and got a chance to catch up. Thank you Evelyn for the wonderful foods and the time to get out of the room together. Mattie loves the valentine and his heart shaped cookie! Thank you also for the wonderful homemade jambalaya and the Starbuck's iced tea! All of it was very tasty, and the fresh fruit is ALWAYS so appreciated. We are so thankful for your whole family's support.
On our way back to Mattie's room we saw Dr. Cantor. Dr. Cantor is one of our favorite residents. She was on maternity leave for the past three months, and we were so happy to see her back and to hear about her baby, Nathan. I hate to say it, but time means nothing to me anymore. I have no sense for it either. On some level seeing Dr. Cantor and Erin (our nurse) come back from their leave helps to put time into perspective for us. It marks the fact that months have past. To me on some level it feels like they just left. I am trapped in some sort of time warp, and I have no idea when Peter and I will break free.
When Mattie woke up from his nap he was restless and wanted to do something. However, he couldn't leave the room because he needed an MTP-PE administration. Erin was Mattie's nurse again today, and she was prepared with demerol just in case Mattie had the same reaction to MTP as he did on friday. Erin monitored Mattie closely, but he handled MTP-PE very well. In fact, Erin allowed Mattie to visit the playroom around 4pm, and Miki came in every half an hour to take Mattie's blood pressure and temperature. It was very nice of the nurses to allow Mattie to go to the playroom. It certainly adds to their workload of running back and forth from the PICU to the playroom, but they understand that Mattie needs time away from his room.
Mattie wore a mask while in the playroom, and he played with Liza (one of his favorite volunteers) and Linda. Mattie's buddy, Charlotte, came for a visit too. Mattie and Charlotte played with model magic, and Mattie is adding all sorts of model magic bugs to his "bug house."
You can see the bug house on the left. It is still a work in progress. I also snapped a picture of Mattie and Charlotte in conversation over the box. 
However, I have to admit that Mattie wasn't the best company today. He was very demanding and grumpy and in all reality wanted to play independently. Charlotte dealt with this very well, and Linda helped to pull out activities that Charlotte wanted to do while Mattie was engrossed with his bugs. The irony is that I could tell that even though Mattie wasn't playing with Charlotte per se, he still enjoyed her presence. Their playdate ended with them playing some games on the childlife Wii. I am in amazement how well little kids take to this technology. They seem to just get it, whereas I on the other hand can't even follow the instructions. I chalk it up to being overly tired! Mattie and Charlotte even had cupcakes together in the playroom! It was nice to see Charlotte and Ellen (Charlotte's mom) today.
Peter went home tonight to get some rest. Believe it or not, this is my very first night alone in the hospital with Mattie. Peter has done overnight stays without me, but I have never done this before. To some extent it is daunting for many reasons. One of which is I am simply exhausted, and I know I have several more days ahead of me. It is hard to do days and nights solo. The resident today was trying to prepare me for several more days in the hospital this week, and you have to remember that Mattie begins his next chemo cycle this coming monday! God give us strength. Tonight was a pip of a night! Unlike how Mattie fell asleep early the passed two nights, that did not happen for me. In fact, I just got him to sleep at 11:30pm! But he put me through my paces tonight. At one time I literally wanted to throttle him. He had me bouncing around looking for games to play and puzzles to build. But mind you anything I brought back to the room, he did not want to play with. I went back and forth about four times, the nurses were just watching me. Even Melba, our night nurse, was empathetic to my plight and tried to work with me to figure out what Mattie wanted to do. Finally I got him in his wheelchair and brought him to the childlife cabinet to pick something out. But there was NOTHING that caught his attention. Then he started on me about a game we played a day or so ago. He described it to me, and it sounded vaguely familiar, but I did not recall the name. It is like I have memory failure, because I can't remember playing the game, or even where I saw the game, and so forth. But he was adamant with me about me finding this game. I looked high and low for it in the hospital. Then I simply gave up! Mattie was thoroughly disgusted with me, and said he wanted Peter back tonight instead of me. I was so frustrated that if I could have accomodated him, I would have! Finally I was able to redirect him (which ISN'T easy if you know Mattie) to making sock puppets. We made a snake puppet together and then we read several chapters from a delightful book entitled, The Mouse and the Motorcycle! I then massaged Mattie's head and finally he fell asleep. I really worked hard tonight, and now I just sit here and think to myself.... you have got to be kidding?! I have to do this all over again tomorrow, and tomorrow, and tomorrow, and the days and weeks after this!
As I sign off for the night, I leave you with an e-mail Charlie sent me today. Charlie wrote, "Laughter seemed to be the theme of the day yesterday. A nice change to see Mattie happy and enthusiastic. I wonder where he gets this supply of energy; if we could tap it, we wouldn't have an energy shortage in this country. Once again, Mattie's spirit continues to amaze me, his count sits at zero and he was so ill just a couple of days ago and now he is celebrating Valentine's day and enjoying his cards and lollipops. May he continue to be pain free and happy and enjoying all the things he has available until he is able to resume life as a "regular" boy, off to school with friends. (my husband added: may your words reach G-d's ear). I am glad you had a break although as you said, the exhaustion is now so deep that a few nights sleep doesn't come close to filling the need. May today be a better day."
No comments:
Post a Comment