Quote of the day:
“To listen well is as powerful a means of communication and influence as to talk well." ~ John Marshall
Mattie had a good night of sleep and was only up once or twice throughout the night, but went right back to bed. However, Mattie couldn't get up this morning. He slept until 11:45am. Normally this would worry me, but Tricia gave me Mattie's blood work results, and it was clear that Mattie was anemic today and would need his third blood transfusion since he entered the hospital last week. We are on day nine in the PICU and counting!
Tricia always takes care of me in the morning, she brings me hot tea, and this morning got me cereal and a few donut holes. These little gestures can make all the difference to the start of a day. It is funny that on any given day we can either make it a pleasant or bad day for others around us, just by doing something as simple as smiling or even truly listening! The HEM/ONC nurses constantly do things that make my life in the PICU bearable. Even though Tricia was our nurse today, other nurses come by and always check in to say hi and find out how we are doing. Yes this could be part of their job, but I frankly don't think so. It is just the caliber of women who serve as our nurses. I think if I had this hospital experience earlier in my life, I would have seriously considered being a HEM/ONC nurse. Not that I love hospitals, I don't! Nor do I think their job is easy, but I admire their commitment, dedication, and love for their patients. Don't be confused by who does the majority of work in a hospital setting. It is a nurse!
Prior to Mattie awaking, Jey, Mattie's 'big brother' came by to visit with Mattie. Mattie was sleeping, so I spoke with Jey in the hallway. Jey and I spoke for some time, and Jey told me how much he respects Mattie for his courage, and outlook on life. Jey said that most adults couldn't handle what Mattie has survived. I agree. Mattie has massive scars on his body, three important limb bones removed and replaced, and all sorts of toxic chemicals floating through his body. Frankly I try to separate myself from this on some days, because if I truly reflect on the aftermath it becomes overwhelming. Jey told me that some day we will be very proud of Mattie for what he will accomplish, and as Mattie ages he will understand the sacrifices we are making for him now. Jey feels that good things will come to us in the future, and he was so passionate about this, that for a minute I almost believed it.
When Mattie woke up this morning, he had his oatmeal, said hi to Tricia, and then had a special visitor. Junko, a good friend of ours from SSSAS, came to spend the day with us. Junko even took the day off of work to be with us. What do you say about a friend like this? Junko and her husband, Tad e-mail me weekly, and have been there every step of the way for us. Junko's son, Kazu, is one of Mattie's first friends at SSSAS, the two boys met each other in camp the summer before kindergarten began. Some days I wonder how my life has amounted to this. Last year, we had the excitement of starting a new school and I had the beauty of watching Mattie develop in a wonderful kindergarten classroom. It is sometimes hard to believe that Mattie's classmates have moved onto first grade. For me the world is standing still, and I forget that others are developing, growing, and evolving without me/us!
Junko brought Mattie and I a wonderful lunch! Thank you for the Starbuck's teas! I love them. Normally I have no desire to eat anything in particular in any given day, other than chocolate, but when Junko asked me what I wanted today before she came, I said some sort of noodle. Junko also showered Mattie and I with gifts. Mattie received a beautiful wood based magic set. He doesn't have anything like this! I look forward to working with Mattie on these tricks. I feel like I have learned so much about magic from Bob Weiman, that I am now getting the hang of it. Junko also gave Mattie a starter kit of Bakugan figures. Neither Mattie nor I knew what these objects were, but basically they are action-figure warriors, that are tucked into spheres that pop open when they're rolled onto a magnetic card. Mattie loved them! But the major hit was a tin can that looked like it held candy, but in reality it was a trick can. When you turned the lid, a snake popped out. Well Mattie tried this trick on Denise, our social worker. Denise hammed it up, and then we kept pulling more people into the room for this trick. Mattie scared Tricia, Amy (another nurse), and Dan (Mattie's in home physical therapist). Dan came to visit Mattie in the hospital since he hadn't seen Mattie in a long time and wanted to reconnect. This tin is Mattie's favorite thing of the week! He couldn't wait to show it to Peter tonight! Junko spoiled me with some very special socks to keep me feet warm. She knew that Mattie had a pair like this and I told her that occasionally I will wear his socks because they feel good. Now I have several pairs of my own! Thank you!
Junko and Dan joined us on our physical therapy session with Anna and Marla (Anna's intern from GW). Mattie did stick to his agreement. He promised to walk from his room to the hallway/playroom and NOT use his wheelchair. He used his walker today and did it. He had a trail of people behind him holding his IV tubes and pushing the huge IV pole, but we were all so proud of his accomplishment! Once Mattie walked to the hallway he got to pick the activity he wanted to do. He selected animal water guns. Mattie loves to do this, because while walking around, he gets us all soaking wet. He loves to see us run around. I joke with Anna, that she is my best form of exercise in a day. Mattie spotted Linda while he was working with Anna, and Mattie sucked Linda into his therapy session. Mattie loves Linda, and if he could spend every waking moment with her, he would. Linda graciously joined along and she became an instrumental part of the therapy session. Mattie started squirting water at Anna and Marla. Anna and Marla were jumping around. It was a riot. Mattie then turned his attention to Junko and I. Fortunately Anna brought towels, because this was our only means of protection. Mattie walked around and squirted Dan as well. While this was happening, Linda temporarily disappeared. When she came back, this is how she looked!!!!! As you can see in the picture, Linda came armed and protected from Mattie's water attack. We were all hysterical, the emesis bin on Linda's head simply cracked me up. I really needed this humor today. You just feel better, even if it is temporary, to laugh! I love Mattie and Anna staring at Linda in the picture!
Mattie had a great time trying to soak Linda through her gown and mask. I just kept snapping pictures to try to capture the moment.In the picture on the right, Anna is strategizing with Mattie on a way to get Linda all wet. Dan is behind Mattie getting a kick out of all of this!
Mattie was determined and literally caught Linda off guard and got her all wet!
Mattie sprayed anyone he knew who came down the hallway. He got his HEM/ONC nurses Kathleen (Who told us that she has heard so much about cockroaches from Mattie that she is now dreaming about them! I understand what Kathleen means) and Laura. Mattie even sprayed Debbi (our sedation nurse angel!). Mattie was loving it, but then got tired and needed to sit down. The fact that Mattie walked all the way to the hallway and did so much activity is amazing, since his ANC today was only 36 (it climbed from 12 yesterday), and he was anemic. Mattie had another great physical therapy week with Anna, and I am pleased with Mattie's willingness to move his body, though he still has fears, which he can't articulate, but it is evident in how he moves his body. Anna is exploring with us the option of getting a walking leg brace for Mattie. I had the opportunity to meet an orthotist last week, who designs custom braces for children. Mattie decided he wanted to go to the playroom after his session with Anna. Mattie played with Meg (one of Linda's interns) for a while, so that I could have lunch. But after a little bit, Meg came to get me because Mattie wanted me to see the ice cream he made with Chris, the president of the Georgetown Chemistry club. Mattie saved me some ice cream and he really wanted me to try what he made. Mattie had a good time in the playroom, but then wanted to head back to his room. It was at that point that Junko came back from running an errand for us. She also brought back some wonderful cupcakes for Mattie. He demolished one immediately! Mattie then met up with Jessie. Mattie loves Jessie, and she inspires him to be creative, and Jessie stayed with Mattie for 45 minutes, while I went with Junko into the parent lounge. As if Junko did not do enough for us already today, she then massaged my shoulders and hands. After she finished with me, I realized that I do have a neck. I lost feeling in it a while back from all the stress I carry there. Junko and I then went back to Mattie's room, and we all had a good conversation together. We chatted about our cats and the funny things they do in our homes! Mattie loved it.
Mattie received a red blood cell transfusion at around 5pm. While this was happening he fell asleep. It was at that point, that Tad, Junko's husband, came by to visit with us and brought us a wonderful and generous dinner! Peter also arrived there after, and we all had a good time talking while Mattie was sleeping. Junko even gave Peter a back massage. I told Junko that Peter and I were in competition with each other to determine whose muscle knots were worse. She laughed and said with both of us, she doesn't know what part to focus upon first, since we are just so tense. We want to thank Junko and Tad for both taking the day off to help us today. This kindness and willingness to share your time is appreciated and won't be forgotten!
Tonight, Peter sent me home to sleep, and tomorrow I will send Peter home. Not that one day will do much for either of us, but we have to start somewhere. My mission tonight was to make more cupcakes. I will not be allowed back in the room tomorrow without them. Also I couldn't break my promise to Mattie. The deal is that each time he walks using the walker into the hospital hallway, he gets 10 pieces of cake. But we have agreed that a cupcake would be a better alternative. So his efforts today will be rewarded with cupcakes tomorrow. I feel it is important to hold up my end of the bargain.
Some of you may be wondering what happened with the e-mail I sent the director of the HEM/ONC practice at Georgetown. I wrote an e-mail to explain my level of disappointment with the contact isolation issue that unfolded this week. I made it clear that my concern wasn't a medical issue, but a psychosocial concern. I feel like I made a compelling case. Or at least it must have been compelling enough that the HEM/ONC doctors will have a psychosocial meeting to address these issues when the director gets back into the country. I think I did as much as I could with this issue, in the hopes that no other family at Georgetown will have to hear the words, "no big deal" ever!
I end tonight with an e-mail I received from Charlie. Charlie wrote, "John Marshall's quote may seem like a strange one to pick but it seems the blog was all about communication and communication failures. It seems some medical schools still are not teaching listening skills or else some physicians are resistant to learning them. Those doctors feel that what they have to say is so important that they have no need to listen to anything said by anyone else. We all need to steer clear of those doctors because at some point the information they refuse to "hear" will cause a patient great pain and suffering (or worse) that could well have been avoided. You ran into one of those yesterday and although I can tell you are already "on it," I suggest you be extra vigilant when dealing with medical personnel like this. I am still floored by the "No big deal" remark. Three weeks is a lifetime in the world of a child and so much more so in a child (and a parent) going through what Mattie is dealing with on a daily basis. I cannot believe he is so lacking in empathy that he has no feeling for this. He really should be banned from any children's unit."
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