The doctors that I like are few and far between. But, as you know from emails I've shared in the past, there are a handful that I really like. I like these doctors not only because they are great doctors, but because they are genuinely good people too. For example, how many doctors (who lives in a different state and who doesn't even take care of your kid anymore) would spend his weekend responding to your emails and tracking down another doctor (who lives in yet another state and who also no longer takes care of your kid) while traveling out of the country to attend a friend's kid's Bar Mitzvah?
I've shared a portion of this email exchange in a prior post. Here is the entire exchange.
Friday 1/13/06 12:42am
I need your help trying to figure out Jack and since P is still incognito, I thought I'd ask you. I won't give you the specific details of what's going on with Jack because I'm not asking you to diagnose him via email. My question -- based on your experience, can a kid have a pneumonia even if his sats are fine (>95%) and his secretions are not colored or excessive? The only "symptoms" are a high heart rate and he looks like he's working to breathe (ok, so I gave you a few details).
I'm lost and frustrated and Jack is not a happy camper.
Friday 1/13/06 7:24am
Speaking hypothetically, yes, one can have pneumonia without those finding. On the other hand, just based on high heart rate and increased work of breathing, a pneumonia is not the only thing to consider in a child with a trach. (I'm thinking airway obstruction at some level ....)
I'm about to leave for the airport but will be in touch later by email. Sorry P is not available.
Friday 1/13/06 8:22pm
Hypothetically speaking, I'd rather have my toenails ripped off one by one than deal with the doctors in this City. You mention airway obstruction and I'm thinking ENT -- we are in big trouble because I've pretty much run through all the ENTs here. So, my only option is to wait until the issue becomes acute and then take him to the ER. It's Friday the 13th and there's a full moon - the ER is the last place I want to be tonight.
Seriously, thanks for your thoughts. I have no idea what I'm going to do, but I do feel helpless - primarily due to my own stubbornness, I know. One of the things I read in doing research for my foundation is that there is a breakdown of parental coping skills - especially for mothers -- the longer they care for their children. I'd say I'm there -- very little ability to cope anymore. Jack has survived this far in spite of me, let's hope he continues to do so.
Thanks again - I'll let you know if it's anything serious. I NEED P, did she say when she is supposed to start working at [Children's Hospital]?
Saturday 1/14/06 6:53am
Sorry to hear this. I do not know when P is starting at [Children's Hospital]; I will see if I can find some contact information as soon as possible.
Jack has survived because of you -- you have survived in spite of him!
Saturday 1/154/06 3:30pm
Have you tried reaching P at her Wash U email address?
No I have not. I can't imagine she would check that email - but, it's certainly worth a try. I took Jack to his pediatrician's today and he is also concerned that he might have an airway issue going on. I thought Jack might have strep throat because he really reacts in pain when we suction him -- especially his mouth. He doesn't have strep. When Jack has his surgery back in July, they closed his trach stoma and intubated him through his mouth and I was told that he had a very difficult time intubating him because his airway is so collapsed above the trach. I'm sure his upper airway was like hamburger following that surgery. I'm now wondering if there is something residual going on from that. In any event -- he needs to be scoped by an ENT. My worst nightmare. So, I must suck it up and try and find an ENT in this City that I can work with - and who is willing to even see Jack given my reputation for changing ENTs. (all the ENTs who see kids are with the same group). My last experience with an ENT here ended when he told me that he couldn't be the doctor I needed him to be given the nature of his practice. How do you respond to that? What is so damn unique about his practice? Problem out here is they want kids who are in and out -- no long term commitments. That's the biggest difference I find between the docs at SLCH and the docs here.
The battle marches on ....
Sunday 1/15/06 7:53 am
Sorry to hear how troubling that is - it should not be! You've probably already checked, but have you looked into resources in relatively nearby cities, like Flagstaff or in Albuquerque? I know they're smaller cities, but they have PICU's so they must have peds ENT support, no?
If I get contact info on P tomorrow, I'll let you know. (I'm actually in Toronto right now ....)
Sunday 1/15/06 9:16am
I think it's a safe bet Flagstaff has nothing (not even snow this year!) And, at this stage of the game, if I'm going to travel for Jack's care, I think I'd rather travel to the known versus the unknown. Thank you so much for talking me through all this .... I'm off to work. Want to trade places -- Toronto sounds fabulous!
Sunday 1/15/06 8:14pm
Toronto was very cool - home now. We went for the Bar Mitzvah of the youngest son of a former peds surgeon from here. Our families became good friends. He moved back to Toronto to be the head of peds surgery at Toronto Sick Kids.
Anyway, if I get more contact information for P, I'll let you know.
Off to work - on Sunday? What's up with that?
Sunday 1/15/06 10:47pm
Got ahold of P. She says you should feel free to call her. Her home number is xxx-xx-xxxx and her cell is xxx-xxx-xxxx. Anytime.
Yes, I really like this doctor. Incidentally, P was Jack's former pulmonologist who left St. Louis Children's Hospital and moved to Florida. She is absolutely the "best of the best" when is comes to kids and vents. She is also a helluva advocate for her kids. I was in tears when she told me she was leaving. She is another one of the doctors I really like. I still look to her when I have questions regarding Jack and his vent and she is always willing to help me out.
Oh, and that ENT who told me he couldn't be the doctor I needed him to be given the nature of his practice .... he's one of those doctors I really don't like.
(postscript: and I did call P and she talked me through some things, gave me some ideas and just made me feel better because she is one of those physicians who truly cares ... about Jack and about me.)
Copyright. All Rights Reserved.