Wednesday, December 3, 2008

Wednesday, December 3, 2008 - HAIL TO ATIVAN!

Quote of the day (Thanks Daddy!) which my dad felt applied to Peter and I: "Winners are not those who never fail but those who never quit." ~ Edwin Louis Cole

Tuesday night was a night to remember. Mattie was up and down all night, but by 4:15am, we weren't prepared for what hit us. Mattie woke up disoriented and screaming. The screaming and crying then became uncontrollable. Mattie started to flail his useable leg. Peter and I started looking at each other, and could quickly see after trying to reason with Mattie (which was impossible) that we needed medication right away. So Mattie's nurse brought in versed, which is a quick acting anti-anxiety medication. It is fast acting but its effects don't last long. By 6:30am, we were right back in the hysterical, irrational, and angry state. Again we gave him versed. But by this time, Peter and I were besides ourselves. We both feel like the walking wounded and now the littlest things set us off. At around 7:30am I sent an e-mail to Dr. Toretsky and then Peter called him on his cell phone. Dr. Toretsky was very responsive and came up to see us right away. Dr. Toretsky recommended that Mattie get Ativan, a more long lasting anti-anxiety medication today. Ativan was administered in Mattie's central line at 9am. By 9:15am, things started to change for the better. Ativan is my new found hero. Mind you at low dosages Ativan doesn't work for Mattie. It makes him hyper and agitated, but at higher dosages it works wonders. I could see Mattie physically and emotionally calming down. He engaged in play with me, spoke to me, and was very coherent and rational. He also was wide awake the whole day, and wanted to do things, unlike the state he was in on tuesday.

Ativan is not a long term solution, and Mattie is being transitioned to oral anti-anxiety medication. Seeing Ativan work so effectively only further confirms to me that Mattie does indeed have anxiety and it is not some simplistic behavioral/discipline problem. The medication is so needed to stabilize his mood, and then it is my hope that other therapeutic modalities can be used to help Mattie through this so that he can continue to receive chemo treatment successful. I contacted several of my colleagues today to get their perspective on Mattie's situation and the community resources I could turn to. As many of you know Mattie isn't very compliant with oral medication. So when the hospital hands me the crushed anti-anxiety medication I now stick it in Dunkin Hines vanilla frosting. Thanks Mommy and Daddy for bringing the frosting over today. Frosting is so thick and sweet, you can conceal anything in it. The prior night, I used our trusty friend, Karo syrup to administer the medication (needless to say Mattie had great out put today!), but because that is a laxative, I can't use this consistently, which is why I came up with the idea of using frosting.

Mattie and I built a lego house today. We literally worked on it from 9:15am until 5pm. It was a full day project, but one he was committed to and focused upon. Also in the midst of what we are dealing with we are trying to get in the Christmas spirit. Linda brought us a mini tree with lights and decorations yesterday afternoon, and last night Mattie got out of bed into his wheelchair and started decorating. He was motivated, and we even strung lights from the ceiling of the room.

This afternoon we had a visit from Alison. Alison brought some incredible hands on gifts. They all positively stimulated his tactile senses. Mattie also loves the Santa figure magnet that is now on his wheelchair. We also appreciated lunch. Mattie particularly loved the pizza. He ate several pieces! Alison joined us in building the lego house, and Mattie enjoyed directing Alison and I around. Thank you Alison for sharing part of your afternoon with us.

Linda also came by and she continued the lego project with Mattie. It took three adults and one child to build this house. But what a beautiful house it is! Linda also brought Mattie some fantastic balloons from the Winter Wonderland party that the hospital had today for the children. Later in the afternoon, Mattie had a visit from Susan D. (his school counselor). Susan bestowed many wonderful gifts on Mattie, such as an adorable Santa hat with snowmen on it, a wonderful vanilla shake, and miniature christmas lights that Mattie happily put on his lego house. It was the perfect gift to match the house. We also want to thank the SSSAS first grade class that created such beautiful Christmas cards for Mattie. They are very thoughtful and meaningful. Thanks Susan for your visit, as always my parents enjoyed chatting with you too.

Mattie also was visited by Anna, his PT, today as well as his "big brother" Jey (ie Mattie's favorite CT technician). Both Anna and Jey were impressed with Mattie's use of his hands and how he uses his right hand and left leg to get things done. Mattie was very motivated to play today, and to me this was a positive sign. He still refuses talking and having most people in his room, but I think those things can be worked on, whereas the hysteria and irrationality we experienced lately were beyond our control and reason.

This evening at 6pm, Dr. Toretsky had a meeting with Peter, myself, the residents, and our nurses. He wanted to coordinate Mattie's care, with regard to the administration of anxiety medication. We also talked about ways to structure Mattie's day to give him a sense of security and routine. It us our hope that this structure will also ease the anxieties of being in his current situation. It was a productive meeting.

Thank you Beth E. for a wonderful dinner tonight. Your crab cakes were delicious and your brownies provided me fuel to write the blog! We look forward to Mr. Betafish joining our life in the near future. Thank you for such a thoughtful gift. Tonight we are quite tired. In fact, I am falling asleep as I am typing this. At the moment, Mattie is getting infused for the third night with chemo. Interestingly enough this chemo is clear in color, like water. It lulls you into a false sense of security that Mattie is only receiving fluids and not medication. Whereas some of the other chemo drugs Mattie has taken are bright red and bright yellow. We are signing off tonight in hopes of getting a decent night of sleep. I at least feel comforted that a plan is in place to deal with Mattie's emotional needs. But under these trying circumstances it is hard to think clearly, to stay optimistic, and not to snap at one another. But we continue. As my friend Kim (Mattie's preschool director) says, "continue, continue... it is a word filled with HOPE."