Mom Wants A Diabetes Cure

Tuesday, April 25, 2006

Diabetes Trumps All

First and foremost, I have to say that I LOVE Dr. McGill. He's the ENT that operated on Brendon. I met him for the first time right before surgery as Jeff had been the one to bring Brendon to the appointments leading up to the day of surgery.

He's from Ireland and has watery blue eyes, and a very ancient Irish look to him. He's probably close to 70. Rather than a brogue, he has a sing-songy soft Irish lilt. I had to resist the urge to ask him to read me a bedtime story and curl up next to Brendon on the gurney and take a nappy-poo, LOL.

To follow up with Brendon's surgery, I'll start with the time before he went into the O.R.

Brendon had been fasting since about 6 p.m. the night before and hit a low around 3:30 a.m., so Jeff gave him some apple juice. Needless to say, because he had to fast before surgery, we were concerned that his basal would be too strong during the surgery because it takes into account the carbs he eats for breakfast.

He hovered between 100-116, but kept dropping a little at a time. We wanted to cut back his basal before surgery, but the anesthesiologist said he'd control his blood sugars with Dextrose being fed through I.V.

OK, fine.

Flash forward to recovery. We met Brendon in the recovery ward and he was crying and very hoarse...I felt horrible, but was able to keep it together somehow. Jeff wanted to test him to see if he was low, and then wanted to dose him for the popsicle he had just eaten. The nurses wouldn't let him...it's against hospital policy.

They understood our frustration and was willing to work with us as much as they could. We'd test with our meter, they'd test with theirs, and then they'd pull back on the Dextrose if he was too low.

Needless to say, this was all so inefficient.

Flash forward again to his room upstairs. The floor nurse says, let's test him every three hours. No way, we say...if not every hour, then every 2 hours because he's not getting a whole lot of carbs, plus the stress could either make him low or high.

She had orders from the Endo Dept on how and when to test and correct him...no one had consulted with us on this. We kept our cool, but we pretty much told them we wanted to determine when he'd be tested and whether he'd need to be corrected or bolused if he ate something.

So here was the plan they allowed:

1. We could test when we wanted, but we had to have a nurse test him at the same time with her own meter as well.

2. If we wanted to correct, or bolus him, there would have to be two nurses in the room to witness the dosing.

3. We could not adjust basal rates or give temp basals.

So, when Brendon had two containers of ice cream, we had to call the nurses in after he was finished...wait 20 minutes for them to show up...wait another 10 for them to calculate for themselves what the dose should be...then watch us dose him with the pump.

I guess with all of our complaining, two Endos came to see us about our "concerns". The one was a newby and gave us a speech about how the body works with stress, blood sugars up, down, blah, blah, blah...I just tuned her out.

The second was the one who wrote up the orders that she didn't consult us on. She says, "Well by not adjusting the basal rates, you can see if the basals are working for you especially since he's not eating." Nice try.

Let's just say that this was the longest, most tedious day of our lives.

Most importantly though, Brendon was kept comfortable...slept on and off all day...took care of Rufus because the surgeon told him that Rufus had the same operation.

The End!

12 Comments:

  • Wow, tedious sounds like an understatement, Shannon. Of course, all this nurse supervision stuff is undoubtely liability related.

    I'm so glad everything worked out and proud of you that you fought for control of the situation since you guys know his case better than anyone!

    By Blogger Johnboy, at 4/26/2006 10:01 AM  

  • Thanks :)

    It was a question of how much to fight and where to back off.

    We got to make decisions, but it was like walking through molasses. Patience certainly came into practice.

    By Blogger Shannon, at 4/26/2006 10:08 AM  

  • I'm glad that everything with the surgery went well - but I'm also frustrated with how, uh, what's the word I'm looking for...crappy diabetes management that so many of us fight with when in the hospital.

    Like - HELLO! Welcome to the 21st century people! Arg. Frustrating. And these are the medical PROFESSIONALS!!

    I guess they can't know everything about everything, but c'mon now...

    By Blogger Scott K. Johnson, at 4/26/2006 10:58 AM  

  • You know, what annoys me is that YOU take care of your child 24/7 - why is it that they don't seem to think you are capable of handling his Diabetes in the hospital as well??? I know there is protocol in hospitals, but you'd think this sort of stuff would have been set up prior to the surgery so you wouldn't have to deal with it *sigh*.

    Anyhow, you handled yourselves wonderfully and so glad to hear that Brendon is doing well! Kids bounce back from these things much better than adults do :)

    Take care!

    By Blogger Jamie, at 4/26/2006 10:58 AM  

  • I left out the part where, during the Pre-Op appointment, Jeff asked about what role we'd play in diabetes care and he was told that we'd have full control.

    Moral of the story...get everything in writing and a shitload of signatures.

    By Blogger Shannon, at 4/26/2006 11:12 AM  

  • in the uk, we can do it ourself. well i was allowed to before and after my op.

    that sucks

    By Blogger cHoCoMiLkRoCkS, at 4/26/2006 1:13 PM  

  • Man... that really sucks. I feel for you.

    I've been in this situation too many times (and I'm in the UK - it clearly depends on the individual hospital!) It can be particularly tough when you feel awful and you're trying to advocate for yourself, (or, I imagine, you are worried about your child and trying to advocate for them) but every time bar one I've gone ahead and ignored the hospital's instructions and done my own thing. I've always asked them what they are going to do - sue me?

    The 'one time' was when I was on an IV sliding scale and the IV access failed. The staff insisted it wasn't a priority to get it replaced, and it could wait until morning - 7 hours away! They even said I didn't need a shot to tide me over and that I was being hysterical! I had no other basal insulin on board, so this was rather like a pump set falling out and not being replaced for 7 hours.

    I had my own insulin with me, but I was so desperate to prove my point and educate these ignoramuses, that I didn't give myself any until they recorded my blood sugar at 30 (540) and I'd started vomiting. I guess it was a pretty drastic way to prove a point, but that particular hospital has never questioned my judgement again!

    I just don't get why we can be considered responsible enough to manage this day in day out, but are expected to hand it all over to someone with a fraction of our experience (since they don't live with it) when we are admitted to hospital.

    Rant over! Just glad Brendon is ok!

    By Anonymous Caro, at 4/26/2006 2:11 PM  

  • I'm so glad everything went well for Brendon and Rufus :-) I hope they have a speedy recovery with lots of yummy ice cream and good blood sugars!

    Unfortunately this story is proof positive of why I am terrified of the hospital when I deliver this baby.

    I can't emphasize enough how much it angers me that we are made so aware, taught, prepared, encouraged that this is very much a self-managed disease and it is all taken away out of fear and ignorance on the EXPERTS behalf. God forbid we enter a MEDICAL establishment that we hope has a clue about modern medicine - and we are back to the dark ages?!

    Grrrrr....

    By Blogger Erica, at 4/26/2006 2:46 PM  

  • Shannon,
    I'm so glad that Superman made it through with flying colors!! What a relief for you to have all of this behind you.

    As for the hospital... I think that *we* tend to forget that we're not typical diabetes patients. I think most pwd (or their parents) do not put forth the effort that those of us who would seek out the support of the OC would. Does that make sense? In other words, it's easiest for the hospital to assume that you don't know how diabetes works (because most people don't- even those with D) and go from there. With this in mind, I generally start all new relationships with healthcare workers, "I get it. You do not need to lecture me or teach me. If you don't believe me, just refer to my HbA1C." OR I divert their attention with a discussion of promising new research to show off what I *do* know. This, generally, gets me treated more like an equal in my care rather than a complete, untrustworthy idiot.

    As for being made to wait for a nurse with the testing- were there closed circuit monitors? Who was going to catch you testing him? Why would it be a bad thing to go ahead and test? I can see being alerted to any alterations of his insulin, but testing? Geesh. I was on my own when I had my kids, but the nurses did make me fill out a record for them, and they tested me with their meter once or twice a day just for accuracy's sake.

    I'm sorry you had to wade through molassas.

    Jen

    By Blogger Jen, at 4/26/2006 7:47 PM  

  • Just another example of hospital beuracratic crap that interferes rather than helps. My suggestion would have been for you to have straightened all this out with your Endocrinologist/Pediatrician before your son's admission. Taking his blood on their meter and your meter is just further traumatizing him. If they wanted to "check" the validity of the readings, all they would have had to do is to have done this one time.

    By Blogger BetterCell, at 4/27/2006 12:00 AM  

  • Shannon, and those of you who have left comments here. Your frustrations over your health management/care in the hospital is dreadful to have to endure...I cannot imagine it was this way! You are caring for your child (or self) everyday and then you are made to feel like you do not know what you are doing. Unbelievable. Sure, I understand and accept the standards the hopsital sets up...but you would think they would have been aware ahead of time and prepared for your self management.
    I beleive when you go to the hospital you have to have someone by your side, like you, who can speak up for your care, and make decisions for you. Someone who stays by your side, listening.
    What an ordeal to add on to everything you were dealing with!!

    By Blogger Tongue in Cheek Antiques, at 4/27/2006 7:34 AM  

  • Shannon, that's such bullshit! I can't believe they had to have TWO nurses in there. What a pain in the ass. I don't know how you kept your cool - I would have been bitching out anyone and everyone that came into the room.

    If you do have to go in to the hospital again, I'd have something signed by your endo that you know what you're doing and you'll be glad to verify things once in a while with the floor staff, but you will handle it yourself. It's absolutely insane to think that you need two adults to supervise you in dosing your child.

    Oh my god, I would have killed someone. I hope O never gets admitted to a hospital like that. I'd have someone's skull for a drinking vessel.

    By Blogger julia, at 4/27/2006 8:41 AM  

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