Holding On and Moving Forward

Wednesday, March 31, 2004

What does it take to be taken seriously?

Saving myself some typing I pretty much just copied and pasted an email I sent to the Hirschprung's Disease e-mail list I joined although I am not sure it is actually Hirschprung's Disease.
Lisa Thank you so much Lisa. I didn't thank you last time when you wrote but today I must write and thank you so very much for suggesting I call the nurse Beth Harrison. Calling her saved my last strand of sanity.
I hadn't received a call from CHLA yet and when they finally returned yesterday's call today the gastroenterology receptionist informed me that the nurses had reviewed it and that it wasn't urgent and so my son would be put on the waiting list.
I am still flabbergasted. When I asked her what the nurses considered "URGENT", she said at this point they only consider blood in the stool as urgent. SIckened to my stomach I quickly called his pediatrician and left a message I needed to speak with him. Then somewhat stupidly and reluctantly I called and left a message for the idiot specialist we saw 6 weeks ago who thinks it is functional fecal retention. Third, called my mother and was talking about this list and then realized I had the name Lisa had provided! I am still fuming when I think about the call with the specialist. Basically chastized me for stopping the mineral oil for 1-2 days when my son gets diarhhea....I told him I didn't want to wait 2 more weeks for the appt with him, I didn't want another appt. period, I WANTED the XRAY done. He tells me he isn't holding off on testing but he would like to see him again and could we come in before the 2 week appt..... HULLO?? AT this point the nurse, who Lisa suggested, rings my other line and I briefly explain to her that Nethan is going to be on the waiting list and that neither Nethan nor myself can wait 3 more months. My son is not going very much even with mineral oil and then also has the diarrhea and of course is in PAIN. She is very helpful and makes suggestions that his ped. request the xray/tests and that it should be water contrast NOT barium. Says there is an opening for new pt. with surgeon Dr. Burns on 4/26 and that at least setting the appt will be started.
Told me that she would be gone next week but would be back the following week. What an angel. All because of this list and Lisa, I feel a little less awful tonight knowing that I made some headway. His ped. did call back and said he would call CHLA tomorrow and ask what tests they would suggest and although I find it kind of scary that he as a Dr. doesn't know what tests to request.... I also am glad that part is moving forward too. Thanks for listening. No, I don't know if Nethan has Hirschprung's Disease. He probably doesn't. Maybe he just needs to grow into his colon? I do know something is W R O N G with my baby. I do know my concerns should be taken seriously. I do know it shouldn't be so difficult to get a SIMPLE test done on a 9 mo infant who has NEVER had a normal poop. I don't even have an HMO! I have a PPO! So in case someday some other internet savvy mom is searching all over the internet looking for information or wondering if there are stories like this.... she will find at least one. I will gladly eat crow and be wrong on this. I do hope it is something really simple like just needing to mature. Well thanks again for listening. I promise to keep you all in the loop with the scoop on the poop....

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