Wednesday, January 7, 2009

Wednesday, January 7, 2009



Quote of the day (Thanks Rich!): "We are like tea bags - we don't know our own strength until we're in hot water." Sister Busche

I relate to this quote, because tonight I feel like I am a tea bag, but my bag isn't holding the tea leaves together very well. Clearly Peter and I have one thing on our minds, as I know it is on your minds too. I appreciate all the supportive e-mails that have been coming in today. It is so nice to know that Mattie's community is out there, saying prayers, thinking good thoughts and are behind us as we learn more about Mattie's lung lesions through the CT scan.

Mattie had a productive and at the same time ornery day. He woke up early, which always amazes me how he can do this since he goes to bed at midnight each night. We began the day building puzzles, which seems to be a trend this week. However, in the midst of balancing Mattie today, I also had someone helping me clean our home, I dealt with the hospital bed people (I am happy to report the air mattress is gone from our home as of 11:30am today!), I confirmed Mattie's scan and arrangements for tomorrow, and also had Mattie's weekly physical therapy appointment. It is hard to juggle all these things because Mattie wants my undivided attention throughout the day.

Mattie and I had a lot to talk about today. I wanted to talk him through tomorrow's scan. Ideally I would love for him to do this scan without being totally sedated. It is certainly safer for him, and the recovery time is instantaneous. Whereas, when he gets sedation, he wakes up agitated, crying, and usually hysterical for several hours. It seems silly to put him through the sedation for just a 10 minute procedure. But I also realize I have to balance my expectations, because Mattie gets super scared in these machines, and he has been unable to do CT, Bone Scans, and MRI's without sedation in the past. However, the sedation team and Linda are aware of what we want to try tomorrow, and if a mild anti-anxiety drug doesn't help him, then indeed he will be sedated for the procedure. So we have that to contend with, on top of waiting an ungodly long four hours for the results. I realize this is truly a SHORT period of time, but to a mother waiting for results it will seem like an eternity.

The other issue Mattie and I discussed today was Dan and physical therapy. I told Mattie that Dan was coming over today to play with him. That caught Mattie's attention. I told him to give Dan a chance, and not to just shut down and not listen. I said that if I assessed he did a good job with Dan, that I would do something nice with him this afternoon. I let him choose what the activity would be. What Mattie desperately wanted to do this afternoon was to ride his bicycle with training wheels. I hadn't asked Dr. Bob whether Mattie could do this, but I was planning on being right next to Mattie while he was riding, so I did not think this would be a problem. Since it was raining, I told Mattie he could even ride in our living room and dining room. Now I should note to you that I promised to allow Mattie to do this, assuming all along that I could find his training wheels. I had taken them off in the spring, as I was trying to teach Mattie how to ride a two wheeler bicycle. I couldn't imagine the wheels had gone far, so the deal was set. Mattie was motivated to work with Dan, and we were going to get his body moving this afternoon on his bicycle. I was actually excited about the fact that he wanted to do this.

Before Dan arrived, Alison came over to visit us. Alison was our point person today, and I tasked her with going to CVS to pick up one of Mattie's medications. Alison told me the issue she had in picking up the medication. Our insurance wouldn't cover the cost of Mattie's medicine today. This hasn't been a problem in the past, since our health insurance has covered a good portion of the medication costs. Why not today? Because we purchased the medication today rather than on Friday. According to their records we should not need this prescription refilled until Friday and therefore, insurance wasn't going to cover it. Well our doctor renewed the prescription for us on Monday and she called it in for us. Since we will be away in NY next week, I wanted all of Mattie's medications current and in supply. Silly me. I should know the two day prescription refill rule, don't you think?! I have nothing else to worry about. In addition to Alison running errands, she brought us some pizza, chocolate (of which I already ate a 1/4 of the bag), an adorable cat mug (to remind me of our cat, who is being boarded long term), and a wonderful container of olives (my favorite, almost as much as chocolate!). Thank you Alison for the visit and for helping us today.

Dan came over at 1pm today. Mattie initially was shy, and wasn't sure what games to pick out for both of them to play together. So I went upstairs and picked out Mattie's two favorite games, Piranha Panic and Funny Bunny and brought them back downstairs. At which point I asked Dan whether I needed to participate or not. I wanted to give them the opportunity to work together without my interference, so I went upstairs. Mattie and Dan played together for an hour. They got along well, and Mattie sounded animated. At the end of the session, Mattie showed Dan his trains and also shared with him his folder about Roxana, his adopted sea turtle. Mattie explained to Dan that he tracks Roxana over the Internet and he also showed Dan the wonderful key chains and magnets he got from the Caribbean Conservation Corporation for Christmas. Now I realize today would not constitute therapy, but I personally feel as a mental health therapist, that you can't honestly work with someone (especially someone who is dealing with anxiety) without getting to know the person first. I remember one of my mentors always said the relationship is the key healing component of therapy. That may sound silly, but a healthy and sound relationship with another human being is better than any medication you can buy at a drugstore. I also feel that without establishing this rapport and level of trust, therapy can't be productive. Now I realize I am comparing apples to oranges, physical therapy to mental health therapy, but there is some overlap. Both of us are working with someone who needs help, who is in a fragile state, and needs to regain trust in one's self to find the necessary tools to live a productive life. It is a shame that insurance companies can not see the relevance of time. Instead they want to regulate the length of sessions covered, and clearly when this happens, the therapist has to cut back on something. So the up front rapport and trust building that should occur within therapy turns out to be the first thing that is expendable. We are a society driven by time. Things have to happen yesterday, e-mails need to be returned within the hour, and so forth. So we also expect our physical and mental health problems to be resolved in the same manner. If only it was that simple. I felt that today Mattie and Dan made a positive investment into their therapeutic alliance.

So the question you should be asking yourself is did Mattie ride his bicycle? Well the short answer is NO! Not out of any fault of his own. I searched the house high and low. Took closets apart, looked outside in our shed in the rain, and I still couldn't find the training wheels. Mattie was getting super frustrated with me today. He was wondering how on earth I could promise this if I did not even know where the wheels were. Good point! Won't be making that mistake again. So now I am on a mission to buy training wheels. He won't let me live this one down, and he will be on my case until I purchase these wheels. So that is my next mission, after of course, surviving the scan procedure, and the intensity of the waiting game for the results. It is my hope that Mattie will really ride the bicycle with his training wheels, and I think if he does this it will be a wonderful form of exercise for him.

Mattie was moody for the rest of the afternoon. He was sulking over the training wheels. At first I got irritated. Then I sat down and tried to see his point of view. So I went over to him. He was sitting on the couch with his head in his lap for quite some time. I then told him I understood he was upset, that I promised something that I did not deliver on, but that it wasn't intentional. I told him that I wanted him to have a good time and it was my intention to put the wheels on if I found them. I then asked him if he saw me looking all over the place for them. He said yes. So he then began to see there really wasn't anything else I could do. I think just acknowledging his frustration and disappointment made a big difference in his attitude. Later on this afternoon, after being wiped out from playing and looking for training wheels, we took a break and watched the movie, Wall-E. I have to tell you, I have watched this movie three times already and each time I tune it out. But today, I actually paid attention. Probably because we read the book of Wall-E last night that Mattie's friend, Liliana gave him. Being able to read the story, helped me follow the movie. So today, I watched the movie throughout, and at the end, Mattie turned to me, and said "aren't you glad you saw the whole movie now?" He told me I had to give it a chance. I am learning simple life lessons, but important ones, from my six year old each day. After the movie, Mattie had a visit from JP and then JJ (our resident Jack Russell Terrier). JP brought Mattie Dunkin donuts all the way from Reston, VA. Apparently Reston, VA's store still makes vanilla frosted donuts, because the one we go to in Arlington, VA no longer does. Mattie was thrilled by the sight of the donuts and ate one while JP was talking to us. Then JJ came by and sat down and was watching Mattie build with his Legos. I snapped a picture of the two of them together. They both have a lot of energy and move a lot, so it is hard to get both of them looking at the camera!






We want to thank Rana tonight for a wonderful dinner. We really enjoyed it and it did remind Peter and I of our Friday pizza nights that we used to have with Mattie at Bertucci's. Mattie was playing on the computer tonight while eating, which in a way was perfect. He was playing and we were shoveling food into his mouth. Not a good way to get him to help himself eat, but an excellent way to get calories into his body!


As I sign off for the evening, I ask you to keep us in your thoughts all day tomorrow. I know how anxious all of you are for the results as well. I appreciate you going through this with Peter and I. I can't describe the level of stress this causes us. But when I look back and think about all the things I used to get stressed about, I now laugh. Not that those aren't real stressors, they surely are, but think about it this way, at any given point during a day, someone in the world is probably taking a medical test and awaiting a test result. There is something so harrowing about this, and until I had to experience this myself, I never gave it much thought. I end the blog with some insights that my friend, Charlie, sent me in an e-mail today. God be with Mattie and with us tomorrow.


"Counteracting A Negative Medical Prognosis"

From Kindness: Making a Difference in People's Lives: Formulas, stories, and insights By Zelig Pliskin Printed with Permission of Shaar Press


I heard these stories from my students: I was told that I had only a few days left to live. That was over forty years ago.

Several doctors told me that we would be unable to have children. Fortunately they were wrong.
My doctor told me that I had only one chance in five hundred of overcoming my illness. I think he was being generous by giving me one chance. I used hope and laugh and spent the rest of my life encouraging others to believe in their ability to recover just as I did.


Doctors are humans. And all humans make errors. Those who feel they never make errors are guilty of an extreme error. Doctors save lives and heal. But they are fallible. Doctors have a mandate to heal, not to give up. Many doctors respect this mandate. Some don’t. They can mean well and in their minds don’t want to give false hopes. But a pessimistic prognosis can create discouragement. It is incumbent upon doctors to qualify a negative prognosis. They do have a responsibility to tell someone that a situation is serious and proper medical treatment is warranted. But it is crucial for them to be aware of instances when people did recover even though it might have appeared to be unlikely. The greater a doctor's knowledge of exceptions to the standard, the greater his ability to soften a dire pronouncement.

Hearing and reading about stories of people who have recovered from life-threatening illnesses will supply you with ammunition to fight depressing medical statements. We need to live in reality. But it is a major error to prematurely feel that all hope is lost when there is a valid basis for that hope.

Medical miracles do happen. People who were not given a chance for recovery have recovered. Even those who do not fully recover often live many more fruitful years than an original prognosis predicted.

Recovery and healing can happen with serious medical conditions. All the more so with psychological and psychiatric disorders. Being told, "Your problem is deep-seated and you’ll never live a happy life," can create a self-fulfilling prophecy that can greatly hinder someone’s ability to regain emotional health. Give hope and encouragement when someone has been told, "Nothing can be done."

"Nothing can be done," really means, "At the present with my limited knowledge and abilities I don’t know what I can do to help." It doesn’t mean that no one else can help. And it doesn’t mean that this very person won’t be able to help in the future. And it doesn’t mean that there won’t be spontaneous remission.

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