Saturday, May 01, 2010

More Conversations

More of my conversations with a doctor.  I'm so blessed to have such an exceptional group of doctors on our team, who have stepped beyond the walls of the hospital to offer care, compassion and support.  I love these docs and I truly owe my sanity to them. 


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5/24/01
Hi -
I thought I’d share the results of Jack’s tests with you. The fluoroscopy shows that his right diaphragm is still not working – i.e.: the phrenic nerve hasn’t regenerated enough to overcome the plication. The left diaphragm is working, but not as good as it could. Dr. S is supposed to talk with the people she knows in Chicago about the phrenic nerve pacer, but I haven’t heard back from her yet.

I had requested the chest CT to see if there was any compression or compromise as a result of the right aortic arch or any changes following the division of the ring. Everything looks fine in that regard.  Dr. S said the radiologist noted the presence of bronchiectasis, apparently a new finding. 

Jack’s neurological antibody analysis done by Dr. P all came back normal. This is one instance I was hoping they’d find something.

All the tests I can come up with have been done and we’re no closer to any answers or solutions than we were before. 

I’ve got Jack set up to try the Pulmonetics vent.  I had to get Dr. S to place an order for the vent.  I get the impression that she is not happy about it. Her favorite vent is the Legacy.  I don’t think she is one for change, but hey - I’ve had to deal with a considerable amount of change in my life, she can deal with some too.  I’ll let you know how it goes.

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5/24/01
Ann,
Thanks for keeping me posted about Jack’s tests. I’m not sure what to make of the continued lack of phrenic nerve function – did Dr. S talk with you about this? I’m no expert, but if the phrenic nerve is not functioning, how will pacing the nerve help? I thought the nerve had to be intact for this to work. 

It’s good the chest CT showed no compression.  Bronchiectasis as an isolated finding – depending on its severity, is hard to interpret.

I know it is incredibly frustrating not to have ultimate answers.  Even in 2001, patients have problems that have either never been seen before or no one has been able to put enough of them together to label them and get a new diagnosis understood.  If it helps at all, if there was a treatable problem, it would have been identified a long time ago. You have been giving him the best medicine there is for whatever his “true” problem is: love and supportive care.  He will grow to reach his fullest potential because of your incredible devotion to him.  There is no medicine or operation that can come close to what you do every day for him.  I’m not just trying to be nice; this is just the simple truth.

Keep me posted.
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5/25/01
Regarding the phrenic nerve pacer – I don’t know if it will help.  Dr. S. did say that if his nerve was completely severed than it wouldn’t help, but it’s only partially non-functioning.  I know that Jack’s phrenic nerve paralysis is not congenital,  it is a post vascular ring division issue and Dr. C did and EMG and determined that the nerve was not totally non-functioning.  Based on what I’ve read, when there is paralysis to the phrenic nerve following chest surgery that most the time the phrenic nerve will regenerate over time – in one study all the kids got their function of the diaphragm back anywhere from 1-7 years. 

I don’t know if the phrenic nerve pacer will help, but I didn’t think it would hurt to ask. I know he doesn’t fit the criteria for the typical user, I’m just looking for ANYTHING that might get him of this #$*&@ vent! The ultimate solution is going to be time and I just need to accept that.

Have a good weekend.
Ann

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5/25/01
Ann,
I see the point about the phrenic nerve issue – I ran into Dr. S today and she said the same thing – it couldn’t hurt to investigate it.

It’s easy for me to say this because it’s not my own kid on the machine. And of course, you’ll take this in the partial light manner in which I offer it. You need to make peace with the ventilator.  The ventilator can be your friend.  

Ok, so it’s a silly idea. Here’s another one. Write a book about all of this. Get your feelings on paper and organize and explore them.  You have learned so much you don’t even realize.  Share what you’ve learned with others.  The worst that could happen is that it may not get published, but then you could publish it yourself on the Internet.

Just a thought. Take care.

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5/26/01
Okay, this will be the last time I will bother you, but I have to respond.  I really appreciate your words of encouragement.  It really helps.  But, I won’t even go there when it comes to taking care of a child on a vent.  There are issues beyond just taking care of Jack and they are usually the more difficult ones, e.g. insurance and equipment issues.  I just found out Friday that I am going to have a battle with my insurance company to get the Pulmonetics vent. They think it’s merely an issue of convenience, so they aren’t going to approve it.  Also, how can it be good for someone to be mechanically ventilated? Granted, it beats the alternative, but how is his life expectancy affected from having air forced into his lungs by a machine?

I’d love to write a book but, before I can – you are right, I have to come to peace with the ventilator and I’m not there yet.  If I do write a book, I would direct it to the medical profession to give them some insight on what it’s like after they send the kid home. You’ve taken the time to listen and find out, most doctors aren’t that caring.

Ann

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5/27/01
Ann,
You’re not bothering me. I’m learning more from you than you are from me in this dialogue. I’m sure that I have no clue about the myriad of “peripheral” issues involved with caring for Jack, but that’s why I admire and respect what you’ve been able to do all the more.

There is no doubt it is better to breathe naturally than have a ventilator do it for you or help you. But, in general, as long as the oxygen concentration is not high and the volumes and pressures aren’t either, there is not felt to be any real damage to the lungs.  Certainly babies who need chronic ventilation because of severe lung disease are able to heal their lungs and grow new lung while on ventilators.  Patients on ventilator may have a shorter life expectancy because of the underlying condition that makes them need the ventilator – it’s not necessarily that the ventilator itself is the danger.  The one hole in my reasoning, of course, is that the artificial airway bypasses the normal protective mechanisms of the upper airway, so patients with tracheostomies may be more prone to respiratory infections.

If you ever write a book, I bet it would be valuable to both physicians and families.  And, I’ll be the first in line to get my copy autographed by you.

Hope you have a chance to relax this weekend. 

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6/2/2003
Jack is scheduled for his first outpatient procedure in this medically challenged City next Friday.  He’s having another bronch by a new ENT that I’m not sure I like yet.  My biggest worry is with the anesthesiologist. Jack’s last bronch was done bedside in the PICU by the pulmonologist and he never even increased Jack’s rate after he was sedated. He just gave him 8L of oxygen instead – I guess to make sure his numbers looked good. Am I safe in assuming the anesthesiologist that will be sedating Jack this time will know to increase his rate when he is sedated? The problem is that you taught me the right way to do things and now I know too much.  Wish us luck.

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6/3/2003
Ann,
I’m sorry that you have gained such trepidation of the physicians there – not that it is an undeserved feeling, but I’m just sorry about it.  After all this time you have learned a lot medically, but you’ve also learned a lot about diplomacy with doctors.  Gently, without fear or threat to your voice, speak with the anesthesiologist and tell him/her upfront about your concerns.  If he/she is a decent person, they will at least listen politely and then take your thoughts into account as he/she cares for Jack. Jack has survived some sub-star docs here – he’ll get through the procedure with your help. Now, you just need someone to help you!

I still have lots of Jack’s pictures up in my office and I occasionally use the picture with him and his baby brother chewing on his vent tubing in lectures I give – of course I don’t mention him by name, but I note how rewarding, difficult and frustrating patients can be!

If there’s anything I can do, let me know.  I’m going to Boston for a long meeting on Thursday but will be in touch by email.

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6/3/2003
Thanks. I always try to maintain a respectful and non-threatening approach with doctors, but you’d be amazed how his or her attitude changes once I start asking things that are outside of the box of what they expect me to know or discuss.  I would think that if you specialize in kids, you should know that you also have to specialize in their parents.  That, I believe is the biggest difference in my experiences here in Phoenix compared to STL.  I have no doubt that these doctors are competent in the science of medicine, they just have a long way to go with respect to the art of medicine.  I also have high expectations when it comes to doctors based on the (mostly) outstanding experiences I’ve had in STL. 

I’m glad you are able to use Jack as one of your positive experiences in your career.  I think he definitely qualifies as “rewarding, difficult and frustrating” – that about sums it up!

Good talking with you …. Enjoy Boston.

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6/3/2003 
I just wanted to add that my medical knowledge is not limited solely to my experience with Jack.  It was always my intention to go to medical school and I spent most of my weekends during college volunteering in the emergency room of a Level 1 trauma center here in Phoenix. So, long before Jack became a resident of the PICU, I already knew the jargon and was not unfamiliar with medical technology or medical professionals.  Unfortunately, I ended up on the wrong side of the white jacket (sounds like a book title, huh?)  I used to think doctors were just short of God before I became the parent of a child who can’t be “fixed” by any doctor, no matter how hard I try.  So, I admit that I have an underlying disappointment and frustration with doctors to begin with and, therefore, it doesn’t take much to push me to the side of disliking a doctor rather than liking a doctor.  But, I also know that I can’t afford to alienate every specialist in this City because they really are in limited supply.  Therefore, I can assure you that I take a non-arrogant and non-threatening approach with docs.  Then, I come home and take a Xanax.  

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6/3/2003 
Ann,
You needn’t worry – I know (intellectually, not emotionally) what you have been through with Jack, and you’d have to be a truly, gullible unthinking person not to have a “healthy” (pardon the pun) skepticism of doctors and the medical world.  I always thought you handled yourself splendidly with everyone here and it sounds like you are being your typical diplomatic self there too.  I may be in the minority, but I don’t like people who just roll over and accept everything doctors tell them – it is people who raise questions and voice concerns that keep us thinking and on our toes.  And if we truly believe we need to continue to challenge ourselves to improve- and we surely do – then that kind of interplay is both good and necessary.  You have always been Jack’s best advocate and you always will be. So, don’t take too much Xanax! 

Good luck and keep me posted.

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8/9/2006 
When you get a minute, can you read the latest update on Jack’s  blog. I need your thoughts.  I’ve about had it with the orthopedic team. My experience with surgeons has always been with the CT surgeons and, from a parent’s perspective, they have always been wonderful to deal with. I am beyond pissed at ortho thinking they can make decisions without my ok.  In addition to the broviac, there is also the possibility that they will have to drain some fluid off of Jack’s left lung and I want CT to do that – not the general surgeons.  Dr. H is available and willing to handle this. Am I being unreasonable to insist that CT do it? I’m told that because ortho called the general surgeons – it is now political if they are called off.  I still think it is my decision, not orthopedic’s.

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8/9/2006
Ann,
You are spot on – as usual – that this is political.  The usual way we do things is that if the CT surgeons already have a relationship with the patient and family, they should be the ones to do the broviac.  Assuming they are willing and it certainly sounds like Dr. H is so inclined.

The broviac will accomplish a lot – in the short term. The biggest immediate benefit is the ability to get blood without sticking Jack.  Whether he needs longer term antibiotics or not should be something decided upon between Ortho and ID – since they were consulted. 

I can’t speak for orthopedics, but I can understand their anxiety. They just put a lot of time and effort – and hardware – which could get infected if he does have some circulating bacteria that is not adequately treated – into Jack.  The somewhat intellectual approach of ID – stop antibiotics and see if anything grow – is potentially a risky venture as far as they are concerned.

Sounds to me like Orthopedics and ID need to have a serious chat, weighing risks and benefits of the various approaches.  Maybe they’ve done that and this is the decision.  Meanwhile, you have every right to suggest that yet another surgical service is not needed, since Dr. H knows Jack and is willing to perform the broviac, if indicated.

I’m sorry you’re all having such issues. Though it may not be of much consolation, given his history and status, things could be much worse.  You knew this would be a big deal and speed bumps (OK, six foot high walls) were to be expected. Please try not to let what you want and/or wish to happen interfere with the decisions needed to see him through the rest of this. You’ve come too far already.

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6/2/2005
. . . 

The other day, one of the young fellows I am training asked me what it was like to have children and take care of critically ill children day in and day out. I reflected a moment and then told her that we eat ice cream at my house for breakfast.  Life is too short and too precious, our world's can be turned upside down with a moments notice and what I see happen to other people's beautiful children could just as easily happen to mine. As a result, if my girls want to eat ice cream for breakfast, we do! 

Both you and Jack made me a better physician and a better person.

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Copyright Ann F. Schrooten 2010 All rights reserved. 



1 comment:

Katie said...

Hey Ann-I love these letters. I love that you have such a great relationship with this doctor. I absolutely LOVE the last email...about eating ice cream in the morning. Thanks...it took me a bit to get to these...but it was on my "to do" list today as I've been anxious to read them since I saw you posted them. :) Thanks again for sharing. And I agree with the dr...you really do need to write a book. (with all your time) :) Take care.