Thursday, April 30, 2009

Thursday, April 30, 2009 --- JUST SAY NO TO ATIVAN!

Quote of the day: "Energy and persistence conquer all things." ~ Benjamin Franklin

Wednesday night was a night to remember! At around 11:40pm, the fun began. Mattie started to vomit. However, it did not stop. He vomited intensely three times, at which point Erin (Mattie's great HEM/ONC nurse) went to get Mattie's break through anti-emetic medication, Ativan. In the past, Mattie has had a hard time with low dosages of Ativan. It would make him hyper, literally climbing all over his bed, and using it as a slide! But higher dosages of Ativan have worked for Mattie to help with nausea. In addition, to getting Ativan, Mattie also needed morphine to combat the pain he was feeling from the recasting. Within minutes of receiving Ativan, Mattie's personality began to change. Mattie became hyper, but in addition to the inordinate amount of activity, Mattie became psychotic. His speech was slurred, he was almost incoherent. He then began to hallucinate. He saw his toy cars flying through the air, he then saw his hotwheels cars transforming, and the real topper for the evening was the cars were talking to him. At one point Mattie said to Erin, "please get me my glasses, I can't see." We just looked at each other, Mattie doesn't wear glasses. Mattie's vision was being affected, which made movement for him downright dangerous. However, I had trouble at first keeping him quarentined to the bed. He wanted to get out of bed. At one point, I leaned my body on him to keep him in one place. I tried the hardest to get Mattie to relax and close his eyes. But resting was impossible. I found myself trying to talk with him and reason with him. Then I caught myself. How on Earth can you rationalize with someone who isn't mentally stable at the moment? So instead, I listened to his stories about cars flying, cars talking, and finally at around 2am, he wiped himself out. Now I have to also let you know that Mattie's bed was defective! The side rail that keeps him secure and in bed wasn't working. Perfect! This seemed like the icing on the cake. Could the night get worse? If you answered yes, you get a gold star.

If this wasn't bad enough, at 4am, I could hear Mattie stirring. He had to go to the bathroom. He was still NOT himself. He couldn't open his eyes, but he appeared to be moving his legs and getting out of bed to go to the bathroom. So I grabbed his urinal, and began to help him. Keep in mind I am VERY tired. So in one hand I have the urinal, and in the other, I had a light hold on Mattie. The next thing I knew, Mattie was going to the bathroom, but his head seemed like a 50 pound weight, and his head and upper torso were plummeting to the floor. Literally Mattie's head was seconds from smacking the floor. I fortunately caught him, but in the process, he went to the bathroom on himself and on my hands. Mattie had received Methotrexate on Wednesday from 6-10pm. So when he urinated, I could see the chemo being excreted in the urine. His urine is highlighter yellow, to match the color of Methotrexate. So needless to say I got chemo all over my hands. My main goal was to change Mattie out of his wet clothes. I did that, and safely put him back in bed. It was at that time I realized my hands were burning. I ran to the sink and started scrubbing the chemo off my hands, but I was developing quarter sized welts on my hands. I was in a panic, and decided to put cortizone cream all over my hands. Thank God, the welts went away and I did not get blisters on my skin. Needless to say, there was no possible way I could get up at 6:30am. I remained in bed until 8am, but then people were coming in and out of Mattie's room, so I knew I better get up and showered otherwise, I could forget it! After this horrible ordeal with Ativan, I have now made it clear, that we do not want Mattie to receive Ativan at all!

Needless to say, Mattie did not wake up early. Linda came in today and stayed with Mattie so I could go get hot tea. I made it to the first floor of the hospital and I then found that Linda left me a voice mail saying that Mattie was up and was crying for me. I never got my tea. But as usual, Linda did the right thing. When I got back to the room, Mattie wanted to go to the bathroom and wanted fresh clothes. So Linda helped me and Linda also made it her business to get Mattie a bed that worked with effective side rails. Linda never ceases to amaze me with what she can accomplish! We tried to feed Mattie some oatmeal, and that set off another bad reaction chain. Mattie started to feel nauseous again. The feeling led to screaming and crying and it did not stop. Fortunately Mattie's nurses ordered Vistaril (the infamous Vistaril, the anti-emetic/anti-histamine in National shortage). It took over 20 minutes for the Vistaril to take effect. But once it did, it made Mattie fall asleep for several hours.

Mattie slept through a visit with Jenny and Jessie (these wonderful art therapists are working with Mattie to help him recreate his Super Mattie Adventures book). Mattie also slept through a good portion of his visit from Meg today! While Mattie was sleeping, I went on campus to have lunch with my parents and Ellen (Charlotte's mom). We were all chatting and I made it through part of my lunch, when Jessie called me and said that Mattie needed me. I jumped up from lunch and headed back to Mattie's room. But I noticed two things today. The first is as I am getting more tired, I have little tolerance for those around me. I literally snapped at two people on the elevator in the hospital. When you are dealing with a trauma, it is almost incomprehensible to think that others around you can't understand or that their world hasn't stopped too. The second observation is I really can't participate in normal everyday conversation anymore. I naturally want to hear what others are going through, but I can't. I don't know and really can't handle hearing about what is going on in the "real" world, my world and ONLY world is Mattie and this horrible disease. It has become all consuming. I am sure to the outsider hearing such a thing this sounds completely irrational and unhealthy. But in order to help Mattie have a chance at life again, I feel this level of intensity is the only thing that works. Needless to say, it is a rather uncomfortable and frustrating experience to feel like you don't fit in, and there is nothing you can do about it, especially since you did not elect to be relegated to the cancer culture.

When I arrived back to the room, I could hear Mattie crying down the hallway. When I came back in, he grabbed a hold of me. The scary part is that Meg, Jenny, and Jessie all observed that when Mattie woke up he was disoriented and did not recognize them. I did not like hearing that at all. I found that Mattie looked very drugged and lethargic all day. Mattie fell back to sleep and literally I was getting concerned. My parents and I happened to see Dr. Abu-Ghosh. Dr. Abu-Ghosh is a patient and calming soul. She listened to my concerns about Mattie's level of disorientation. She then passed along the message to Dr. Synder, Mattie's doctor. Dr. Synder found me within minutes, and was very responsive. She told me that sometimes Methotrexate can affect the brain, and perhaps it was a good idea to wake Mattie up to find out just how non-responsive he was. I agreed with her precautions. What I have learned in all of this is ALWAYS expect the unexpected. Mattie has never had a negative reaction to Methotrexate, but I guess since this is our last round of Methotrexate, something was bound to happen based on our track record.

Dr. Synder was able to get Mattie awake, but it wasn't easy. Meg helped me during this time, and she also made Mattie more oatmeal because he said he was hungry. Mattie did eat this time, and is slowly pulling out of his stupor. But even tonight, his eyes do not look right and his pupils are still very dilated. He is now having a tantrum about his cast and his central line dressing itching. He is sticking a straw down through his cast, and he is crying at the moment. God give us strength!

Later this afternoon, Mattie played a pretend game with my parents, featuring their made up character, Captain Mattie. Mattie enjoyed it, but still wasn't himself. Mattie also enjoyed building magnetic cars that Charlotte gave him. Mattie loved it, and was happy to instruct us in the building process. When Peter arrived tonight, he took Mattie to the playroom, and they started to create dreamcatchers together. But Mattie was in a snappy and bad mood, and they headed back to the room rather quickly. We want to thank the Parker family for a lovely dinner. Mattie ate the entire grilled cheese, and he loved the Sponge Bob crackers.

As Mattie heads into Friday, Meg will be back with us, and I hope that things will be better. Mattie will also have physical therapy tomorrow with Anna. He just wasn't up to anything today. In the midst of all this craziness, Ann was a brave soul and e-mailed and even called to check in on Mattie and I several times today.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Wow, I am exhausted just reading Wednesday's blog. If we could just bottle some of Mattie's energy, we would not have an oil crisis and you would have a steady income stream. What a full day and of course it began by running the hurdles of admission one more time. I truly admire your ability to maintain your sense of humor in the face of the absurd situation at the hospital with regard to admissions. I love the pictures Mattie took of the straightening and recasting process; I am sure it helped him to feel more in control of another invasion of his personal space. I also loved the description of the exercise class; maybe Mattie wants to make a video of his exercise program to work out with later on. I am sure he can come up with a creative title for his show!"