Wednesday, February 13, 2008

Update and then some


Jack is back to his old happy and healthy self. Yippee!! The constant suctioning has ceased, the breathing treatments have been cut back to twice and day and the heart rate is much lower. It makes me so happy when we can get through an illness without having to see a doctor. It's not that I don't like doctors ....

I also received word today that our Department of Developmental Disabilities has approved and ordered the eye gaze system. Another, Yippee!! I'm guessing we'll have the system delivered sometime this week or next. I also think the UHC appeal will be filed this week as well. I hesitate to say "I've no doubt" that the denial will be reversed, but I really have no doubt that the denial will be reversed.


Speaking of doctors, I recently learned of a “Dear Physicians of the Future” letter writing campaign that a first year medical student is working on as a special project. The request put out by the medical student said:

As part of one of my courses Reflections on Doctoring, I am putting together a compilation of letters from patients to future physicians. I know that this will be useful for future doctors like me to read about patients' and families' experiences and it will make us better doctors in the long run. What I am hoping you'll be able to do is write a letter entitled: Dear Future Physician and then tell me anything that you think would be important... maybe you liked the way a certain doctor treated you and the difference it made.

Naturally, I couldn't pass on the opportunity to share my thoughts with these soon to be practicing physicians. Here is my letter -- much of which you will have already read in one post or another on this blog.

Dear Physician of the Future,

On a cold January day in 1999, my two month old son was admitted to the Pediatric Intensive Care Unit in respiratory distress. Five months later, he left the PICU with a tube in his neck, a tube in his stomach and connected to a ventilator to support his breathing. My son was born with a congenital muscular dystrophy and, as a result of his disease, he has severe muscle weakness and is ventilator dependent 24/7. As the parent of a child with chronic and complex medical needs, it’s not only important to find a physician who is knowledgeable and skilled in his or her specialty, it’s perhaps more important to find a physician who will give me and my child his or her time, who will listen, and who is willing to go the extra mile in this time of managed care. It’s important to find a physician who cares.

As my child’s physician, you need to understand that I was sent home with a medically fragile child and I had no choice but to learn how to care for him. I am capable of changing out a tracheostomy tube and replacing a gastrostomy button. I know how and when to suction my child’s airway, give breathing treatments, and hook up the oxygen. I can bag my child through a period of respiratory distress. I can adjust ventilator settings and troubleshoot a ventilator. If my child requires a hospital stay, don’t treat me as though I don’t know how to care for him and don’t prohibit me from being an active participant in his care. Remember that I am part of the team and my vote counts in all decisions to be made. While I didn’t go to medical school, I know more about my child and his medical condition than you do. When I bring something to your attention, please genuinely consider it. Respect me.

Recognize that sometimes all I need for you to do is to listen as I vent my frustrations and fears. I don’t need you to have all the answers, I just need you to care. Make yourself accessible. Give me your email address and don’t be opposed to answering my questions in writing. Return my phone call the same day I leave a message. I will only email you or call you when I really need your help.

Be honest and forthright with me, but don’t give me the worst case scenario only. Take the time to share all the possibilities and options and give me time to process the information. Don’t take it personal if I seek a second opinion or choose a different course than you recommend. Remember that a diagnosis is an opinion, not a prediction. Never underestimate the importance of hope.

Because of his disease, my son cannot walk, talk or breathe on his own. Yet my son is a human being with feelings. When you walk into the room, acknowledge my son. Talk to him—he can hear. Look into his eyes—they will speak to you. See his smile—it will light up the room.

Over the last nine years, I’ve had the opportunity to spend a great deal of time in the presence of physicians. I’ve encountered the good, the bad and the indifferent. But, by and large, I’ve had the privilege of dealing with an exceptional team of physicians who have provided the best of care to my son. One of my biggest fears the day my son and I left the PICU was of being abandoned by the people who—from my perspective—put me in this position in the first place. I’ve been very fortunate. I’ve not been abandoned, I’ve been embraced by several very special physicians who have always done everything they can to ensure that my son and I have the best quality of life under the circumstances. They’ve not only cared for my son, they have cared for me. They have supported me, educated me, guided me and, in doing so, have truly made it possible for me to “keep on keeping on”.

I’d like to share one particular encounter with a physician that I will always remember:

Early one morning as I was sitting in the chair next to my son’s bed, the PICU intensivist came over to talk with me. What will always stay with me was this physician’s simple act of getting down so that he was eye level with me, rather than looking down on me, when he spoke. To most, this may seem like a meaningless, trivial gesture. On the contrary, it is indicative of the special person this physician is. He is unassuming, he is respectful and he is kind. This physician remains a part of our team to this day—not as someone who provides hands-on care to my son but someone who is there to listen and offer words of support and encouragement. He is a physician who epitomizes what it means to practice medicine from the heart. Be this kind of physician.

It really is the little things that make all the difference. As someone who must develop long term relationships with physicians because of my son’s chronic condition, I have discovered over the years that, if I have to choose, I’ll choose a physician who cares over one who is the “best”.

Allow kindness and compassion to guide you and, above all else, be a physician who cares.


Time for me to catch a few hours of sleep. Do you see what time it is!


julie w said...

So glad Jack is back to his old selft again - and great news on the eye gaze system!

Your letter to the physicians of the future is very good - I've yet to put one together, but you took a lot of the same thoughts I had been having.

It must be constant fun in your house with Eric to keep you laughing, I love hearing about his ideas.


Carrie said...

I am so glad Jack is feeling better and did not have to encounter a doctor/hospital.

You have such a way with words. Your letter says so much about how we as parents really feel without the negativity that we sometimes show. I hope the future doctor uses your wisdom and your words to be the best doctor from the heart he/she can be.


Rachel Marini said...

Wow, that letter was amazing! You have a way of getting down on paper many of my very thoughts and heart feelings. Thanks for speaking for so many parents of special needs children through your wondeful letter!

Melisande said...

Amen, Ann! Well said as usual!!

Anonymous said...

that letter is amazing. you speak for so many of us, and always make your point so clear.
Glad Jack is 100% again

Anonymous said...

Hey Anne-
I was just reading up on the past few weeks. I LOVE the Dear. Future Physician. That should be published in every medical book. At work the other day I was sitting at the front desk listening to two very good doctors talk about a baby.....they kept refereing to the baby as funny looking....there is something funny about that baby. OW MY GOD, I nearly jumped out of mys skin, I told my co-worker that is someones child they are talking about, it is not a thing. I remember one time some jerk of a doctor telling me there was something about Aaron that did not look right.....something funny. I could have decked him, today I probably would have. Yep, a 7 month old preemie with a trach probably does look "funny' but thats my baby! always NICE JOB!
Glad Jack is doing better!