Quote of the day: "Treat people as if they were what they ought to be and you help them to become what they are capable of being." ~ Goethe
Last night was challenging. Not so much for Mattie as it was for me. I felt very sick, so much so I had trouble falling asleep. Mattie was up with me, and at around midnight, I went to lie down next to him to rub his head and neck (in hopes of relaxing him), and we both landed up falling asleep in his twin sized hospital bed. I eventually woke up, but this morning I told Mattie that he made my stomach feel better. When I told Mattie how I felt this morning, he said, "it was the power of being next to me!" Indeed!
Mattie woke up this morning around 8am. He was not in a good mood or happy. His stomach was bothering him, and in fact, he attempted to vomit three times. But nothing came up. He was in pain, and we called his nurse, Kathleen to help us. Kathleen gave Mattie Kytril, his anti-emetic and zantac (an antacid). After the IV administrations of both medications, Mattie went back to sleep until 11am. I napped next to Mattie periodically this morning, which should tell you how tired I am. Both of us were wiped out and I have no doubt Peter wasn't far behind since he was up throughout the night to help Mattie with bathroom runs. The positive note is that Mattie's blood Methotrexate level is at an all time low for 24 hours post infusion. Ellen, Mattie's wonderful night nurse, posted the results during the middle of the night for us. His blood level is 5.97 and next to the number, Ellen wrote, Yipppppeeee!!!! Remember to get discharged Mattie's blood level must be .1 or below!
While Mattie and I were periodically napping this morning, I had a lot of visitors. Normally I would get up, but I wasn't moving this morning. It was almost a comedy show. I had one of the Eucharistic ministers stop by. I was half out of it, and she came in and gave me holy communion. Mattie was lying on one of my arms, and I couldn't move. Then I closed my eyes again, and the next minute there was a knock at the door, and it was Dr. Matt, Mattie's psychiatrist. Matt was perceptive enough not to bother us, but said hello to me and held my hand and then left. But you are getting the feeling for what napping is like here! There is no napping. I must stay alert to some extent to ensure that Mattie can nap.
When Mattie woke up, Kathleen came in to take his vitals and examine him. Kathleen could see Mattie was in no mood this morning, but she caught his attention because she told him she had something for him. Kathleen gave Mattie a copy of the music from the Curious George movie. Mattie liked the gift and we did listen to the CD several times today.
Mattie headed to the playroom, and he and I met up with a few volunteers and they attempted to help us with a puzzle Mattie found a day ago in the playroom. This is quite a puzzle. It is 600 pieces, and to me ALL the pieces look exactly alike. The puzzle actually makes the backdrop of a grandfather clock, and it comes with a real clock face you can pop into the puzzle. Mattie really wants to put this puzzle together, but when I tell you it is difficult that would be putting it lightly. We worked on the puzzle for a bit, and while we were working, Elizabeth (a social work intern) came up to visit Mattie. Elizabeth is the person who created the roach terrarium for Mattie as well as allowed Mattie to listen to ABBA on her computer yesterday. Well today, Elizabeth burned an ABBA CD for Mattie. He was THRILLED. We played the CD in the childlife playroom, and also later used it during his physical therapy session! I would say that Elizabeth is doing an excellent job connecting with Mattie. He now refers to Elizabeth as "my friend who likes cockroaches!"
Mattie's nurse, Kathleen, came into the playroom to show us the special tile she made out of clay in Mattie's honor. This tile will be part of a Lombardi Center art display, in which tiles from doctors, nurses, and patients are plastered to a large elephant structure. It is quite a talking piece, and tiles on the structure change periodically. Kathleen's tile truly touched me. Kathleen is also one of Mattie's nurses who attended the music fundraiser that Charlotte's brother, Tyler spearheaded for Mattie in Alexandria, VA. Can you see why we love these nurses? Sure it is their job to take care of Mattie, but the way in which they care for Mattie and us and their commitment to their patients goes beyond a job description. Enjoy looking at this beautiful tile, it is not a finished product yet because it still needs to be fired and glazed. Kathleen wrote on the tile, "I wish for a Mattie Miracle" Love, Kathleen." You will notice that Curious George is drawn on the tile! Mattie and Kathleen have a running joke about "George." As most of you know Dr. Bob named all of Mattie's limbs. Mattie's left leg is named "George." I say it is named George after Curious George. Mattie lands up using "George" to steal things out of Kathleen's pockets, mainly because he is curious. So it seems to me that Curious George depicted on this tile is fitting! You may recall that Kathleen is also the nurse who put gak in her pocket one day, in hopes that "George" would find it. In any case, I wanted to share this tile with you, and it is gestures like this that speak volumes about the importance of human connections in the recovery process.
Mattie and I had a special visitor today. A former student of mine and now a friend, Susan, came by to visit us. Susan brought us a wonderful lunch and gifts for Mattie. In fact, Mattie ate an entire roll of bread today with two large pads of butter. Mattie simply loves butter and I figure if this is what he will eat right now, I support that. But you should have seen his fingers and face, he was covered in butter. He was a tasty sight. Susan gave Mattie some wonderful bubble toys, such as a sword, and wand. Mattie covered the playroom in bubbles and everyone was having a good time trying to catch bubbles. Susan also gave Mattie a child sized hard hat. On the front of the hat it says "boss!" The perfect hat for Mattie. Susan gave Mattie some wonderful books and we look forward to reading them together. What kept Mattie engaged through lunch was a craft activity Susan brought called, Kirigami. It makes beautiful shapes out of paper. A volunteer today helped Mattie create some snowflakes. Check them out! Susan, Mattie liked your cupcakes too. They are delicious!
After lunch, Anna, Mattie's physical therapist, came to have a session with Mattie. Mattie was slow to start, but despite his protest, he did manage to get out of his wheelchair and do some walking with his posterior walker. Mattie did physical therapy to ABBA music as we walked around the hallway and of course he had his entourage with him. Or his cheering section! It is funny, do you think you can be so tired that you can go through the motions, observe what is going on around you and even participate in those activities, but just feel so dull and foggy? This is how I felt all day today!
After Mattie's therapy session, he had the special treat of designing a different kind of hat with Meg. I could describe it, but I think a picture speaks a thousand words!
Later this afternoon, Mattie and I had some time together to build a lego pirate set. We had a nice time building and talking. Laura, one of Linda's intern, also came in to join us and we talked about Mattie's hospital lego structure which is going on display this weekend on the first floor of the hospital. We are very excited to attend the art show on Saturday!
When Peter arrived at the hospital, we all had a lovely dinner together thanks to the Coker family. Thank you Carolyn for the wonderful messages of support today, they meant a great deal to me. Your dinner was very thoughtful and generous! Thank you.
After dinner, Peter watched the Curious George movie with Mattie and is now constructing an Alice and Wonderland puzzle that Susan brought Mattie. While they were busy doing this, I have been doing my second favorite pass time since Mattie has gotten sick, that's right, laundry!
I end tonight's blog with a message I received from my friend Charlie. Charlie wrote to me today to let me know she is heading out of town to a conference and may not have access to the Internet. She wanted me to know that if I don't hear from her, she is still thinking of us. As many of you know by now, Charlie is a former student of mine, and is now my friend. She is a devoted blogger and I appreciate her support. Charlie wrote, "I think most of us would have been grouchy had we been up every few hours all night long. It is always amazing how much of an impact a good night's sleep or lack of it, affects a person and how they view the world. That said, it was especially gratifying to see that Mattie's group of supporters and friends were able to turn what could have been a very negative day into one that was very positive. Friendship, acceptance of who we are at our most basic level is such a tremendous gift. I give great credit to those who have been able to do this for Mattie especially Brandon who can reach out across the divide of age and interests and connect so well without making it about common illness. Seeing Mattie surrounded by friends and supporters and reading about his "traveling concert" certainly brings a smile to everyone's face. I hope this admission is as uneventful as it can possibly be."
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