Wednesday, January 21, 2009Tuesday night went more smoothly than Monday. We had Melba, who is a night nurse that truly understands and appreciates Mattie. Mattie needs positive feedback more now than ever before. Melba loves how Mattie likes doing puzzles and she even took some time last night to try to complete a puzzle with Mattie. This is clearly not in any Hem/Onc nurse job description, but it is this human and compassionate nature of Mattie's nurses at Georegetown that make a long night bearable!
Mattie's pH in his urine has been on the acidic side all day today. So at one point today they gave Mattie a bolus of sodium bicarbonate in addition to the bicarbonate in his regular IV drip. Apparently the pH of the urine has to be between 7-8, in order to process methotrexate from the body effectively. I tell you, I learn something with each hospital stay. I learned last night after I wrote the blog that Mattie would have to be NPO (nothing by mouth, no food or water) starting at 10am today. So basically he went throughout the day without any food. He needed to do this since he was going to receive sedation so that Dr. Bob could derotate the prosthetic in Mattie's left arm. Well trying to keep Mattie occupied today and not focusing on food and water was nearly impossible at times.
Mattie and I had quite an active day. We did five 100 piece puzzles. I captured Mattie on camera after he finished two of the puzzles Meg (Linda's intern) gave Mattie. Mattie really loved the gingerbread house puzzle, and it apparently jogged his memory. He told Linda about the time in preschool that we brought in homemade gingerbread houses for the children to decorate, and in his kindergarten classroom when we brought in huge gingerbread men for his classmates to decorate. Funny how such a puzzle could trigger such fond memories. The irony is at the time I did these activities in Mattie's classrooms, I wanted to do something special for Mattie and the other children, but now I see these activities mean so much more. We as parents have the gift of being able to create life long memories for our children. Memories that they can pull from during difficult times. We live busy lives, and sometimes we ask ourselves why on earth are we taking on ONE more project or task? Well the answer is simple. We do it for moments like this today, when you hear your child tell you that he/she enjoyed what you did, that it made a difference, and that this activity made your child happy! With children sometimes the appreciation is delayed in coming, but I have no doubt all our efforts get filed in their mental databases.
Linda brought Mattie some fun hands on science experiments today where we learned about polymers and about non-Newtonian fluids (fluid whose viscosity varies depending upon the applied stress). Mattie had a ball making a gloopy mixture out of cornstarch and water, and soaking all sorts of things in water to see what kinds of reactions they produced. Below are some of his experiments in progress. Now if you are familiar with the size of our hospital room then you know we are not dealing with a lot of space, and today Mattie filled it up royally!
Mattie's nurse today was Tricia. Tricia is one of Mattie's favorites. She is another nurse that knows how to relate to Mattie. She was telling us about her teenagers who like to play with their DS Nintendo player. This inspired Mattie. For the first time in ages, he asked to play with his DS. So he occupied himself for a little while and we played all sorts of games. But one thing is for sure I need a DS tutorial big time. I can't figure out what on earth I am doing. Mattie got frustrated with my inabilities today.
Earlier today, Mattie did a magic show in his room for Tricia and Meg (Linda's intern). Mattie was very proud of himself, and he was very eager to show Tricia and Meg the secrets behind the magic. I told Mattie he could do this, but if he was really performing that he should keep his audience guessing. Mattie was practicing his magic skills because Bob Weiman (SSSAS' Head of the Lower School) was going to be visiting Mattie later in the day. Bob has initiated the idea of performing a magic show with Mattie at the hospital. I think this activity will be very good for Mattie for so many reasons. Any activity that is mentally stimulating and encourages Mattie to interact with others, and develop confidence in his skills is a very productive and worthwhile activity in my book. I also think Bob is an excellent mentor and role model for Mattie.
This afternoon, Mattie had just about had it with being confined to his room. So when Linda came to visit, we decided to take Mattie out to the hallway and wait for Bob Weiman's arrival. At which point, some folks from the Lombardi Clinic came up to visit Mattie and to see him performing some magic tricks. Within this group of people there was also a little boy around Mattie's age who also had come upstairs to see what Mattie was doing. This should be great in theory, right? The little boy noticed that Mattie was building a model out of wood (one of the many models that Linda got for Mattie) and he wanted to do one too. So he helped himself to a model. Mind you there were many, a whole stack of models. When Mattie saw that this little boy took a model from what he deemed his pile of models, this started to get Mattie very upset. But what caused Mattie to completely shut down, was he noticed that Linda, Jenny, Jessie, and Tricia were spending time talking with the other little boy. Naturally of course, this is their job, they are there for all the children. Mattie literally got jealous and very territorial. He shut down and cried and Tricia and Linda brought Mattie back to his room, because he then decided he did not want to perform magic this afternoon after all. Mind you Bob came all the way from school to work with Mattie. I am coming to terms with all this guilt I am feeling over inconveniencing others.
In addition to our visit from Bob, Junko (a friend and SSSAS mom) came by to visit us. Junko saw this whole incident transpire, and like Bob, she too felt like I needed to let it go. That I can't control an uncontrollable situation, and people know that when they visit Mattie that he may not be in a good place to receive them. Junko and her family are incredibly supportive of Peter and I. Junko brought me lunch from a restaurant she has introduced me to that I love. I love it because things just seem so fresh with a lot of vegetables. I was starving today because while Mattie was fasting so was I. It wouldn't be right to eat and drink in front of Mattie, especially since he was literally craving food all day. But as soon as Mattie gave me a moment this afternoon, I couldn't eat fast enough. Thank you Junko for a fabulous lunch. Mattie loved all the snacks and he ate the entire macaroni and cheese you brought him. That was a hit! Also thank you for all the gifts you brought Mattie, I know he will enjoy them. If all of this wasn't enough, Junko also gave me a back and neck massage. This is another one of Junko's skills.
Once Mattie reset this afternoon, Bob was able to go back to Mattie's room and show him a new magic trick. It involved making money! Sounds like a great trick to me. I am so happy it turned out to be a positive afternoon after all, and Bob and Mattie are planning their next practice session or two before Mattie performs his tricks for a few people. Thanks Bob for coming today and for being so generous with your time and skills.
At around 4pm today, Dr. Bob came to perform his medical magic. Mattie was sedated with propofol and was knocked out in seconds. I waited outside of Mattie's room while Bob rotated Mattie's prosthetic back in place. Bob would have allowed me in the room, but the hospital staff preferred me out of the room. I was fine with this decision because Bob was in the room with Mattie. Bob literally was able to get Mattie's arm back into place within seconds, and he also worked on straightening out Mattie's knee. Bob explained to me that Mattie keeps his right knee slightly bent all of the time. So he rarely straightens his knee, which one would need to do in order to walk. So I feel like I am on a mission now. I have got to get Mattie to straighten that leg, and also I have got to get him to start walking normally, rather than shuffling side ways. I know doctors feel that Mattie's recovery will come once chemo is done, but in my mind, it must start now. We have a lot of barriers to break through in order to be able to work up to doing physical therapy aggressively.
It was a very full day and tonight at 8pm, I had a board conference call to run. Where I found the strength to do this is so beyond me. I guess you just rise to the occasion sometimes. I am fortunate that Linda found me a quiet place to conduct the conference call, and for that I am grateful. Trying to have a conference call in the family lounge is a joke because you have to deal with people watching TV, talking, the microwave, and the washer and dryer. Finding a quiet space is a rare commodity in a hospital.
We want to thank the Arends family for the wonderful dinner and desserts. They were enjoyed by all. Thank you for your support. I am signing off for the night. Mattie is still up and watching the movie, "Bolt" that Linda brought for Mattie to watch tonight. Linda set up a special movie night with a big projector and screen for Mattie. Thank you Linda! Mattie is complaining of some pain in his arm, but so far tylenol is doing the trick. Let's hope for a good night. His methotrexate level was 1128 on tuesday, and today it jumped down to 3.52. We are getting closer to our .10 methotrexate blood level target!
No comments:
Post a Comment