Tuesday, October 21, 2008 - UPDATE

Tuesday, October 21, 2008 - UPDATE

It is now 10:30pm, and Peter and I are thoroughly worn out. How Peter is going to work tomorrow is beyond my comprehension. We had virtually NO sleep last night (monday), and who knows what tonight holds. Peter and I have been struggling all day with pain management issues. Dr. Bob Henshaw (Mattie's surgeon) came to visit Mattie this evening and felt that Mattie looked overly sedated and sleepy. Of course this is wonderful from the pain management standpoint, however, from a recovery stand point it isn't so great. Mattie is too tired to talk, attempt to eat, move, and so forth. Peter and I are learning that there are different camps of thinking about how pain management is administered. By tonight, our patience was frayed and we finally spoke with an anesthesiologist resident who worked hard at coordinating Mattie's team regarding the administration of pain meds. Folks from Georgetown came up to talk with us about the dangers of upping the dosage of Mattie's perineural, contrary to Bob's advice. Peter and I are tired, confused, and feel that these folks need to coordinate Mattie's pain care better so they are on the same page, and we are not left to understand this at 10:30pm. I think we currently have a plan, but right now Peter and I are sitting on the edge because Mattie's blood pressure has shot through the roof. We are trying to figure out what is causing this high blood pressure.

I am not sure how Mattie is dealing with all of this. He is being asked to deal with superhuman issues and concerns, but he is holding his own. He already understands the purpose of a PCA pump and the button he needs to press for pain control. He also is very compliant with the nurses, considering all the pain he is in. I want to thank Alison for lunch today and Ashley for dinner tonight. You both spoiled us today! Thank you Jane for your very generous gift card you sent us, we will treat ourselves to dinner! Thank you RCC for the wonderful artistic helping hands! We love the handprints of the kids and love how they decorated them. I can't wait to show them to Mattie. Thanks Mommy and Daddy for the donuts and cheesecake today. Mattie will enjoy these treats soon. I am closing tonight with some wonderful e-mails I received in the last day or so. I received many and will put a few on at a time. Keep saying a prayer for Mattie during this time of healing, and we appreciate your thoughts and words of support and encouragement. I can honestly say I couldn't get through the day without all the amazing support inside and outside of the hospital!

Sylvia M. (Counseling Professor at GW) wrote, I read through your blog about being awake at 2 o'clock and dealing with Mattie's pain. It reminded me of my own experience of lying in a hospital in a life-threatening situation, albeit as a young adult. What I wanted to offer you was my observation that there is a kind of dissociative effect that kicks in which I think is a protection that is wired in to us. It keeps us 'observing' the pain rather than fully experiencing it. There is a lot of literature about this phenomenon, but I wanted to share my personal experience with it because I'm hoping that it will give you comfort to think that Mattie might be experiencing that 'observing' of his own pain and therefore be somewhat protected from the full experience. My spiritual side tells me that this is God being with us in our pain.

Bob G. (friend from RCC) wrote, Today is a huge day for your family and I just wanted to let you know that you all are in my family's constant thoughts and prayers even more than usual. I'm a big believer in the power of prayer and positive energy and the two of you and Mattie are getting that from literally thousands who are hoping that things go well with this first surgery. On my way in to work this morning I heard a piece on the radio about Mattie Stepanek, whose books you have commented on in the blog (I also knew Mattie's Dad when he worked at SOME for many years). I think the emotion of that piece combined with me thinking about the surgery today became overwhelming at some point and I just started crying on the drive in to work today. The people on I-395 must have thought I had lost it, but it didn't matter b/c it felt good to release a little of what has been building since we heard about Mattie's diagnosis. Ashley and I are both daily blog readers and we often discuss what a powerful and emotional experience it is to read it every day. I have definitely experienced the full range of emotions along the way. I have felt angry and frustrated when I hear about insensitive treatment (i.e. turning the lights on at 4:30 am to get vitals when Mattie (or the two of you) may have finally started getting some much needed rest) or non-sensical treatment such as a doctor telling you that only Mattie can push the pain button for his medication after surgery. I really feel myself cheering you all on when you advocate for Mattie's care and best interests. There are so many times when you guys have put your foot down on an issue and I've just found myself saying "Way to go Vicki/Peter!!" At the same time, I have vicariously experienced the joy that you both feel when Mattie has good days, when he smiles and plays with his friends, and just gets to be a 6 year old. And I have also experienced your sadness, confusion, acceptance, and sometimes anger when the reality sets back in that Mattie isn't an average 6 year old right now. As a parent, I think you are doing a phenomenal job in your whole approach to this. You are honest with Mattie, honest with the blog, and your deep love for each other and for Mattie is truly heartwarming and inspirational. Mattie's story has touched so many in a variety of ways, and I know I am not alone in sharing this last point. I hope that I have never been a parent that has ever taken my kids' happiness for granted, but this experience has helped me to gain a much deeper awareness of this issue. In the last few months, I have noticed that I hug my kids a little tighter, hold them a little longer, and really appreciate the laughter and fun that we share as a family. I know you all might feel like you are on the receiving end of a lot of gifts these days, but this is the gift that you all have given to me and my family and we are very grateful.

Alison (friend from SSSAS) wrote, I absolutely love the pre-op photo! It really tells a story – how something as awful as cancer makes us truly appreciate our loved ones. It reminds me of a quote I clipped this summer, written by Tony Snow, the news anchor and presidential spokesman: “The art of being sick is not the same as the art of getting well. Some cancer patients recover; some don’t. But the ordeal of facing your mortality and feeling your frailty sharpens your perspective about life. You appreciate little things more ferociously. You grasp the mystical power of love. You feel the gravitational pull of faith. And you realize you have received a unique gift – a field of vision others don’t have about the power of hope and the limits of fear; a firm set of convictions about what really matters and what does not.” It goes on, but this is the part that captured my attention this summer. I keep it on my desk. And, while I’m sure you feel this is a “gift” you could happily have lived without, the photo captures a bit of what Tony Snow was talking about when he called it a “gift.”