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Clinic Appt Today

Discussion in 'Parents of Children with Type 1' started by SarahsMum, Feb 17, 2010.

  1. SarahsMum

    SarahsMum Approved members

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    We had to take Sarah to a outpatient appointment today - bubblewrap and all

    Anyway go in to get measurement done (weight, length and bloods), and they tell me Sarah is next in, so I find a seat far away from anybody else.

    The appt was with our Diabetes team and our Endo is away on extended leave so was very happy to see that we were booked in with the fellow whom we get along with extremely well.

    We get called in within 5 mins of waiting and she has a Medical student with her.

    So she starts giving the student a medical summary about Sarah. Explains how she is both Insulin insufficiant but also enzyme insufficiant.

    She then asks the student "Can you tell me why a person may be totally pancreatic Insufficiant" and she says only 1 way.

    1. Patient has Cycstic Fibrosis

    Dr explains she is close but Sarah has Congenital Pancreatic Agenesis, and her response was "but how can she be sitting here smiling at me, medically speaking its incompatable with life"

    Lesson #1 - Never underestimate the willpower of a prem baby.

    So the Dr goes on to explain how Sarah has fought many illness, she immune comprimised, also has congenital Liver Disease and had a heart repair.

    So Im sitting there listening to her, was very surreal. She was talking about how Diabetes management in such tiny babies is incredibly hard and is explaining that in Sarah's case getting the balance of Insulin Management and enzyme replacement is an experience they are still learning from.

    She was trying to explain one of Sarah's admissions where they had absolutely no idea what was wrong with her and her sugars where all over the place and they just didnt know what to do but to cross there fingers and hope against hope that she would recover from the hypo and that her body would hang in there until they figured it out.

    Listening to her was a bit of a light bulb moment. She was explaining how when she first met Sarah she was 3 weeks old and she had never before seen such a prem baby with a diagnosis of Neonatal Diabetes and that it was heartbreaking in these early weeks, heartbreaking for the parents and heart breaking for the medical team.

    This particular Dr has always gone out of her way to say to DH and I that we are doing a great job, many of this particular medical team dont (her previous consultant had no bedside manner at all)

    Anyway she was explaining to the student that survival of these babies is a joint effort and without parents to take such great care and advocate for there children the Drs just cant do there job.

    I dont often cry infront of Drs (although I have broken down in tears on 2 admissions when this particular Dr has been on) but sitting there listening to her repeat Sarah's medical history and her praise that we are doing the best job we can at managing her diabetes almost had me in tears.

    But it goes to show just how effected Medical teams can be effected with a critically ill child whom they simply dont know how to treat them effectively.

    But Great news is her "average" Bllod Glucose is 8.5 which I am extremely happy with!

    And finally at 14.5 months she is 7kgs!!!!!!!!!!!!!!!!!!!!

    --------------------

    "having a baby is difficult, having a child with diabetes is more difficult, but having a baby with a rare type of diabetes that few understand is extremely difficult and isolating"
     
  2. StillMamamia

    StillMamamia Approved members

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    Wow! Very inspiring!!

    We often forget that docs often have an "emotional" connection to their patients. And many do know what a tough job it is for the parents.

    Not too long ago, my oldest with D was supposed to have surgery. All was ready (we were in front of the op room), but due to a high fever overnight, the anesthesiologist preferred to cancel the surgery. So now, it'll be on March 3rd, if all goes well. Afterwards, as we waited for the sedative's effect to wear out a bit, one of the endo nurses came by the room to see how we were doing.:cwds: I found that to be really really nice. Also when we first headed to the ER for this bit of a problem (before finding out what it is), my DH crossed one of our endos. She had heard that Ian was in the ER and went to see what was wrong.

    Anyway, I ramble a lot.:eek:

    You're doing a fantastic job, all of you, and Sarah seems to be a fighter!!
     
  3. joan

    joan Approved members

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    What a beautiful story. She is so lucky to have you and you to have her.
     
  4. Flutterby

    Flutterby Approved members

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    I'm so glad that you have a great team working with you in Sarah's care.. It sounds like that Dr. is a true gem! :)
     
  5. Toni

    Toni Banned

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    Sarah is truly a miracle baby! And it looks like Mom and Dad are miracle workers as well. I hope it wasn't too stressful having the endo discuss the details of your daughter's medical history..... sounds like you may not even have been fully cognizant of the battles she faced and her odds. So glad she pulled through and is doing well. And gaining weight.:D
     

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