Monday, November 8, 2010

Patient Abandonement

Since Oct. was Ds Awareness month, and I was writing about Tomas' arrival I didn't want to interrupt with my doctor drama, but now that it is November - drama away!
On Oct. 29th I got three letters in the mail (one for each of my kids) from their pulmonologist. They all said the same thing, that she was shutting down her office effective OCTOBER 1st and moving out of state. The medical records were with her and if we wanted them faxed to another doctor's office she gave us a fax number and a form to fill out. That night I was in a panic - how could I get another pulmonologist that fast? The ones at the children's hospital had a 4 month wait and winter is on its way! The following morning at 8:10am I get a phone call from the pediatrician that he got a very curious letter from the pulmonologist and did I know anything about it? I told him I got the same letter - he said, "Well then, we need to get Tomas a new lung doctor ASAP." No kidding, not to mention the other two who have asthma and the older one who has fairly significant asthma, but yeah, I need a new doc ASAP for little man all right. He gave me the numbers of some people and said if I had trouble (more than a week's wait) to call him back.
Amazingly, when I called the first preference of the pediatrician and explained the situation, I was able to get an appointment for today. That was so perfect, the girls have to wait a bit longer since they weren't as urgent, and will go mid-month to get established, but Tomas was definitely the priority. Next up, getting his records faxed to the new office. I faxed the form to the number on the letter, NO ANSWER. I called the old office number - no answer, I tried the old fax number - no answer. I called the pediatrician - he had no more luck than I. I googled the number the pulmonologist left, it is a fax number for a non-medical office in New Orleans. I tried the phone number connected to that office, but NO ANSWER.
That's it -she's gone, and has records for all my kids and I can't get them. My fantastic pediatrician copied what he had and thought was pertinent (that alone was 80 pages - can you imagine what the full file must be like?) and I picked that up on Friday to take with me today. When I got to the new doctor's office and handed him the records and old x-rays (which thank God I kept a copy of!) he said - "So there's no way to get his records?" Nope, not that I can tell. He said, "Well, you're not really supposed to do that. She didn't give you any warning?" Nope. I took Tomas to her on Sept. 28th for a sick visit. She shut down Oct. 1st. He said "It's like patient abandonement - if she hadn't left the state I would...(he didn't finish)"
And I thought, "That's it." That is exactly what I feel like, it's horrible. No office notes, no plans for treatment. Nothing. We are starting completely over. And she was supposed to file an appeal for his Synagis since he was denied this year. I have no idea whether she did or not. The worst part is she was a fantastic doctor. She took hours when needed to care for him and go over everything, and called to check on him (or Olivia) sometimes even pretty late when she had finished rounding at the hospital. I am assuming something horrible happened because nothing else makes sense. But not having any working numbers also makes no sense so I just don't know.
The new pulm was very good and needs to go over what I gave him today, and then get back to me. Of course the word trach was tossed around, because when you think Ds, obstructive sleep apnea, and aspiration, you think trach, but I hope that he'll come around the way the others did. If Tomas should need it, then so be it, but right now I don't think he does. Time will tell. He also wants to move up the sleep study - it was supposed to be in January. He wants it much sooner, since pulmonary hypertenstion is a worry. Right now we are just in the evaluate mode.
Fun, fun, fun!


  1. Holy crap! That's scary enough that she has all your info somewhere in lala land - yet alone that you actually need the info. Wow. Hope you find her.

  2. Is it possible that maybe she is literally in the process of moving and just hasn't gotten the new office set up? Maybe she didn't expect any calls so soon. If not, then I am with you...something horrible must have happened. Either way, good luck with your new Pulm. Who knows, maybe this will somehow be a blessing in disguise and he will have a new view of things that will give you some better answers!!

  3. Wow that is strange. Hopefully she will resurface soon and you can get the records. best of luck with the new Doctor. Will say a prayer he is best for Tomas.