No, I haven't dropped off the face of the earth, I've just been too tired to blog lately. Fact is, I'm tired a lot lately. When my head hits the pillow every night my body literally aches and it aches when I wake up in the morning. I'm not used to feeling this physically tired and I don't like it one bit. My age and Jack's size/condition have officially caught up with me and I'm not sure there is a solution to the "problem". I am trying to get more sleep (unfortunately, it's never uninterrupted sleep) and I'm trying to get back into an exercise routine. I'm hoping with more sleep and exercise I can overcome whatever is making me feel 88 instead of 48!
Monday, January 18, 2010
So now that you know why it's been more than a week since my last post ... on to the topic of this post.
Ever since Jack's discharge from St. Louis Children's Hospital PICU in June of 1999, I've kept in regular contact with six of the doctors who provided care to Jack during his stay (and after). One of these doctors is Dr. M. Upon entering the PICU on a cold January day eleven years ago, one of the first doctors we encountered was Dr. M - a cardiothoracic surgeon. Dr. M operated on Jack two times during his PICU stint - first to divide Jack's vascular ring (ironically, 11 years ago today) and two months later, to plicate Jack's right diaphragm - which was paralyzed as an unfortunate consequence of the surgery to divide the vascular ring. Dr. M was also kind enough to do Jack's muscle biopsy (bedside in the PICU). I say "nice enough" because typically, cardiothoracic surgeons don't do muscle biopsies. In Jack's early PICU days, I wasn't tuned in to hospital politics and knowing who does what and, more importantly, who doesn't do what. Did I already mention, cardiothoracic surgeons don't do muscle biopsies? They have more important surgeries on their schedules - like heart and lung transplants. However, being the naive person I was, when I heard neurology wanted a muscle biopsy, I decided right then and there it would be Dr. M. I knew Dr. M; I liked Dr. M; and Dr. M adored Jack. The PICU staff seemed a bit uncomfortable with my request for Dr. M, but they honored my request and forwarded it on to him. In retrospect, I vaguely remember Dr. M not really being that happy about doing the muscle biopsy (you could see a lot more of what was going on in the PICU back in those days because the "rooms" were only separated by curtains, which were usually open.) But, when Dr. M came over to Jack's bed to talk with me, he said "yes" he would be happy to do the muscle biopsy (he really wasn't!)
The weeks following Jack's trach surgery (and no, I didn't ask Dr. M to do the trach surgery), I kept telling everyone that "I can't do this" and "I don't want to do this". Dr. M told me that if I didn't want to take Jack home, he would! I think he was serious. Dr. M really did adore Jack and I was told that when Dr. M arrived in the PICU every morning, he'd stop by Jack's bed first to get his morning smile.
Dr. M is one of the very special doctors who has helped carry me through the last eleven years because he truly cares. I know I harp a lot about doctors who care. However, when you are the parent of a chronically ill child, having doctors who care makes all the difference in the world. My personality needs to know that doctors care and because I've had the privilege of dealing with some genuinely caring doctors, I have zero tolerance for doctors who don't care. It doesn't matter how skilled a doctor is, if he doesn't show that he cares about Jack as a human being, I'm done with him (or her). The primary reason we travel 3000 miles every other year is to have Jack seen by doctors who care.
Dr. M cares.
Here is what Dr. M wrote in Jack's book that was signed by the PICU staff before he was discharged:
Over the past 6 months, I've had a chance to get to know you inside and out -- all you have to show for it is a few scars! What I have to show for it is good memories of a handsome little boy with a wonderful family. My biggest wish for you is that you have a long, healthy life filled with love and happiness.
Here's a letter I received from Dr. M after sending him a picture of Jack back in 2000:
Thank you very much for the absolutely fantastic picture that I received of Jack. You really know how to make someone's day. It was wonderful to see you and Jack recently outside the Intensive Care Unit and, needless to say, despite all of his circumstances, Jack is growing up to be an incredible young man. As I know is the case with you, I very much look forward to the day when I can see you and Jack bopping around with no ventilator attached.
Thank you so much, once again, for the beautiful picture and thoughtful gesture. I wholeheartedly welcome any such updates in the future as you are so inclined.
Of all Jack's doctors I've kept in touch with over the years, Dr. M hears from me the least. I don't have the same rapport with him that I do with Jack's other doctors. But, I do send him an email update on Jack at least once a year. I sent my most recent Jack update to Dr. M about a week ago. Today, I received his email response. Please know that I share the following not because of what it says about me, but because it was said. I share it not as a reflection of me, but as a reflection of Dr. M.
Thank you for the update -- it is very thoughtful of you to somehow find the time amidst your daily juggling act to craft such a nice note. You haven't changed a bit and Jack has really grown up. I immensely respect the way in which you have truly devoted yourself and obviously made sacrifices too numerous to count in order to provide an extremely high quality of life for Jack. It is a very touching story and you have demonstrated a strength that I am certain most others could not if they were under similar circumstances. A hug to Jack from me.
As I lay my tired body down tonight and hope for a minimally interrupted night of sleep, I will feel at peace . . . because Dr. M cares.
Dr. M and Jack circa June 1999