Tonight's picture was taken in December of 2008. We were home, and Mattie was recuperating from his second limb salvaging surgery. Typically our couch wasn't in front of our window. But it was moved there because a hospital bed replaced our couch's location. Mattie was truly unable to move his left arm or walk. Which was why this photo was so remarkable to me. Mattie loved Chinese food and the year he underwent treatment he seemed to really enjoy it! Perhaps it was the spices. In any case, Mattie learned how to use chop sticks and was eating away, which was a wonderful thing to see, since Mattie did not eat much throughout the entire 14 months of treatment.
Quote of the day: The greatest gift you can give is your time. Not money, not items, not food, not pretty cards with handwritten sentiment, but time. People need your presence. The way you can help a soul the most is to simply be there. ~ Richelle E. Goodrich
I uploaded a video so you could see a little bit of what I am describing below. Before Peter would leave the hospital to go to work, he would always say good-bye to Mattie. He had to do this because if Mattie learned that Peter left for the day without him seeing him, that made Mattie very anxious. As Mattie's treatment continued it wouldn't matter if Peter said good-bye to him in the morning or not. Mattie would just become inconsolable when the three of us weren't together. On December 2, 2008, (7 years ago today) I took it upon myself to figure out what the problem was and after researching the issue through my computer (thanks to my university's library system) I learned Mattie had Medical Traumatic Stress. However, until I figured it out and labeled it, NO ONE provided me with any answers! Shocking no???? How I determined this in my frazzled, stressed out, and lack of sleep state is really beyond me, but I knew something was wrong and we needed to address the problem ASAP! As I always say.... you are your BEST doctor!
Tonight's posting below is from December 2, 2008:
Mattie held his own last night during chemo. He was still up when Peter and I went to sleep. He went to bed while watching a Scooby Doo video. He has trouble relaxing and shutting down, more so these days than ever before. Mattie was up several times during the night because he had to go to the bathroom, not unusual considering the quantity of fluid being pumped into him. As one point during the night, Mattie did not make it to the bathroom in time, and Peter and I were lifting him with the help of Melba (Mattie's nurse) and trying to place clean sheets under him. Between the bathroom runs and vital checks, it felt like a very busy night.
This morning Mattie was resting peacefully, but I had to wake him up since the hospital was changing all the mattresses in the PICU. I did not want the staff to move Mattie, so I woke him up and got him cleaned up and transferred into the wheelchair. Mattie did not take well to being woken up and this started a chain of other reactions. While in the wheelchair I tried to offer Mattie different activities to do together. I even asked him if he wanted to visit with Brandon or go to the childlife playroom. He refused all ideas. It was then that he asked where Peter was. When he found out that Peter left early for work, all hell broke lose. Mattie started to scream, "I want my Daddy. Daddy, Daddy, Daddy!" At first I understood Mattie's desire to be with Peter. But the more hysterical Mattie became, the more I was unable to reason and rationalize with him. I tried every thing possible. I listened, I empathized, and then I explained that when Daddy can't be there for him, I am. I even called Peter at work three times during the day to let Mattie talk with him and they exchanged two e-mails. I thought we would break through this fixation on Peter by mid day, but no such luck. The issue became more pronounced as the day wore on. By noon, my parents came to visit and they couldn't get over what they were seeing. By 12:15pm, I couldn't take the screaming, crying, and the irrational behavior. Mattie was also not allowing medical staff into the room. So I went out to the nurses' desk and asked that Mattie be given versed, which is an anti-anxiety medication that works instantaneously, but its effects only last for about 20-30 minutes. The medication calmed him down a bit, he was still upset, but not looking like he was going to jump out of his chair or hitting me with his leg.
But by 2:15pm, Mattie was screaming again in full force. Again, I asked for the medication to calm him down. During the afternoon, I kept growing more and more concerned with the behavior I have been observing and experiencing with Mattie over the past 12 days. But today's behavior disturbed me because I could no longer console and comfort Mattie. In addition, I couldn't rationalize with him. So at which point, I went out to see when our psych consult was coming to visit us. The residents gave me some excuse that they couldn't get a hold of the psychiatrist. It was at that point, I started yelling. I told them this wasn't acceptable. That I had been waiting all day for this doctor, and if they can't get someone from the hospital to help me, I was going to find someone on the outside. That seemed to get results. After my tirade, I went back to the room, and in between holding Mattie and dealing with his fits, I logged onto the George Washington University's library database system. I have learned when all else fails, research the problem. So I started using all sorts of keywords, until I found something that intrigued me because it described Mattie's situation to a T. It is "medical PTSD." I have felt for a week now that Mattie has PTSD like symptoms, but I was unaware that one can develop PTSD from a medical procedure. It certainly makes sense, but I found reading the abstracts fascinating. In addition, parents of children with cancer can also get PTSD, you don't have to personally experience the traumatic event to be able to get PTSD. It can be your emotional reaction to observing the traumatic event. Not that this describes me, but I found it interesting what a profound impact cancer can have psychologically on a patient and his/her caregivers.
I had the opportunity to meet with a psychiatrist today who got to see Mattie in full form. In order for me to talk with the doctor, I had to hold Mattie's ears closed and wrap his head in my shoulder. The psychiatrist understood and observed my concerns and agreed that prescribing Mattie anti-anxiety medication is a good way to proceed in the short term. However, like we both know that will not get to the heart of the issue. But I feel unless we stabilize his behavior, he won't be able to comply with treatment, he won't be able to participate in physical and occupational therapies, and certainly he will sink further into social isolation. I am very conservative when it comes to psychotropic medications, but in this instance, this is in Mattie's best interest. The psychiatrist told me that most parents under these circumstances would have cracked along time ago.
No comments:
Post a Comment