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CGM during surgery?

Discussion in 'Parents of Children with Type 1' started by Snowflake, May 20, 2014.

  1. Snowflake

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    My daughter is having a tonsillectomy on Friday.

    I just got the orders from the endo who is advising the ENT on managing T1 during surgery (not our regular endo, but they are in the same practice).

    The orders instruct us to remove her CGM before surgery -- I'm not sure if they mean only the receiver, or also the transmitter/sensor. Has anyone received similar instructions for surgery? I don't really understand why the CGM would be a problem in the OR? And it also seems like it might be a help for the staff who will be watching her bg?

    I'm not sure if this is worth making a big fuss about, but I would like to have a functioning CGM in the hours after the surgery, as I think it's going to be a struggle to bolus for nibbles of popsicle in the first 24-48 hours.
     
  2. rgcainmd

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    I'm not necessarily agreeing with this decision, but I suspect they are requesting no CGM for one (or more) of the following reasons:

    It is customary that everything be removed before surgery because things fall off/get pulled off and get lost.
    Inability to adequately sterilize non-OR equipment and/or possibility of said equipment contaminating the sterile surgical field.
    Anesthesiologist (and any other MD who is not an endocrinologist) is likely not familiar with the workings of a CGM (unless s/he has T1D or has a child with T1D) and already has her/his hands full with the usual OR monitoring equipment (which also makes a lot of beeps and buzzes, so the sound of a CGM alert or alarm would be confusing and therefore potentially dangerous.)
    CGM functioning could be compromised in the OR, i.e. signal may not be picked up by the receiver because of interference from other medical equipment. (Not all mobile phones work in an OR.)

    Regarding needing a functioning CGM in the hours after surgery in order to be able to bolus for nibbles of popsicle, you can still do fingersticks to determine BG. If you insert another CGM sensor right after surgery (or thereabouts, as time in recovery after a tonsillectomy is relatively brief if there are no complications), you'll be up and running in about two hours...
     
  3. Snowflake

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    Thanks, rgcainmd. This helps me put the instruction in perspective.

    I have other concerns about our post-care instructions (e.g., an ICR given to the ENT team that seems plucked from the air), and this probably isn't worth quibbling with. The issue of the receiver getting lost in the OR occurred to me, so it's probably not worth the marginal value of having it in the room.

    Also, from reading non-D parent accounts of tonsillectomy and recovery, it looks like the docs might favor Tylenol over ibuprofen post-op, is that right? In that case, then the Dex might not be of any value in any event. The one time we gave her Tylenol not thinking about it, the Dex values were way off for many hours afterward; it got stuck on a HIGH arrow up, which was ugly to look at even though we knew it wasn't correct.
     
  4. Megnyc

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    I actually think the dex would be really useful in recovery-- I would want to do whatever it took to not be dealing with the 2 hour warm up during recovery. Not sure about the acetaminophen vs. ibuprofen issue but your ENT should be able to work with you to find a med that doesn't have any tylenol in it. In terms of post op care, the nurses may really push sugar free popsicles or jello. If your daughter has never had them before you may want to try them before hand or just go with the regular ones. Sometimes the artificial sugar can cause stomach aches or worsen nausea and it really is not that difficult to just bolus for normal popsicles (at first you may want to wait and make sure she keeps them down before bolusing). Also, see if you can get an rx for zofran to have on hand in case of vomiting once you get home. And if she is having any nausea or vomiting right afterwards you can/should request meds for that right away.

    I'm not really sure why she can't just wear the sensor in the OR and you keep the receiver (since it is such a sort procedure I'm not sure if it would be useful enough to warrant explaining it to the anesthesiologist-- once she is back in range it should pick right up) . When I was younger my parents always gave the guardian (receiver for medtronic CGM) to the anesthesiologist for all surgical procedures unless I would be getting a scan during or right before/after the surgery. In dozens of major/minor procedures while under general anesthesia, I don't think I ever removed a sensor for reasons not directly related to the need to do a MRI or scan of the actual area where the sensor was placed. I would think that wouldn't be an issue if this is a routine tonsillectomy.

    ETA: Also, just fyi sugar free popsicles almost always have carbs in them! It is generally like 5g a popsicle (but check for the specific brand) but if she is having a few of them she may need insulin for them.
     
    Last edited: May 20, 2014
  5. Snowflake

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    Thank you for flagging this, Meg!! I looked at the instructions and you are correct: the endo is telling ENT post-op nurses to offer sugar-free popsicles in recovery.

    Why?!? This is the same endo practice whose nutritionists have been telling us for a year to avoid sugar-free products. And there's only a 6-carb difference between the name-brand sugar-free and regular versions anyway, so I don't see the logic. DD has a tricky tummy and is a super-picky eater, so surgical recovery doesn't seem like a great time to pull a switcheroo on her when we've been promising her an all-you-can-eat popsiclorama for the past two weeks. And on top of all that, we've already had the post-op nurses make sure that their regular popsicles are GF because DD is celiac also, so we will have to check on the sugar-free versions as well if they follow this order.

    I'm going to have to drink a lot of coffee before this procedure, as it sounds like the recovery period is going to require hypervigilance from the parents! :)
     
  6. sincity2003

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    My son just had his endoscopy on 4/30 and we were allowed to keep his Dexcom on and working and we even sent the receiver back with the anesthesiologist. They were actually quite grateful for it. I would make sure that there is no MRI or CT equipment in the room (the nurse who calls you the day before can tell you that) and I would not remove it. If you get there and they still insist you take it out after you show them what it can do, then I would do it. Honestly, the GI nurses (and the pre-op nurse who called me the day before, for that matter) didn't know what a CGM was. When we checked in to our actual pre-op room and we showed it to the nurses/anesthesiologist, they were actually impressed with the technology and again, grateful for it.

    Good luck to your daughter!
     
  7. StacyMM

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    This. My son has had two surgeries since starting the Dexcom. The nurses were in love with it and the anesthesiologists thought it was wonderful. I sent the receiver back each time, after explaining the buttons to the anesthesiologists. After surgery, it was put on his bed with him and came out to recovery there. During his stay (one surgery required an overnight stay) I told the doctor and nurses that I was managing his diabetes care, which made for a happy post-op floor. They came in, collected readings from us, noted his numbers, etc. They were required to do finger pokes a few times,but let him use his pokey...just had to be read on their meter. It made the surgery, the stay and his recovery so much easier!
     
  8. Ali

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    One would think it would always work this way. But I as an adult at an excellent medical center with a long established Diabetes center failed during my surgery to follow any instructions per me or my Endo. I awoke post surgery with my pump ripped out and no instructions on hand to the nurses about checking me or giving insulin and I had of course not arrived stocked up with supplies as I assumed I would come out of surgery still attached to all my stuff and at the least with an informed staff. All I can say is triple check all instructions and make sure your Endo is close by to help out, I was more than appalled by what had happened.
     
  9. dianas

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    I as a general rule assume that anyone in healthcare who does not work in endocrinology will not know about pumps or cgms and in general hospital routines don't always accommodate our individual routines.

    That being said I had an orthopedic surgery last week and where I was scheduled anesthesia manages all diabetes meds preoperatively and during and after surgery and they did a good job. I was impressed with all of their protocols. I chose not to wear my pump during surgery because of all of the imaging being used throughout surgery and electrocautery also so I gave my pump to my husband right before going in for surgery but I did go ahead and leave my sensor inserted and left it up to the anesthesiologist on my case whether he wanted it with him during surgery. He did and really liked it. I turned off everything but the low alarm. I also went in knowing full well I might possibly lose everything as I wouldn't have control of it.

    Bringing a change of supplies is a good idea, I did not as I figured they could give me corrections or IV glucose while I was there and I could deal with a site or sensor change when I got home.
     
  10. Snowflake

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    Wow, thanks for sharing this, and thanks also to Dianas for offering her experience. This is extremely disturbing. It sounds like borderline malpractice.

    I feel like we've got good coordination between the ENT and endo at this point, but it took some work. I made several phone calls to ask about post-care planning for both my daughter's celiac and T1, and generally got the brush off ("oh we deal with diabetic kids all the time"). Finally, my husband happened to get a very on-the-ball nurse on the phone, who recognized that there needed to be some advance planning about operative and post-op care, esp since rehydration is particularly important after tonsil surgery.

    If it hadn't been for this absolutely amazing nurse, I don't think the ENT doctor ever would have sought orders from the endo clinic, because the ENT is just focused on her role as surgeon, not how to take care of the child afterward. The hospital wasn't initially planning to admit my daughter for an overnight stay afterward, but after hearing the difficulties involved in getting our particularly headstrong 4-yr-old to take fluids and carbs when she feels lousy, the nurse advocated for post-op admission and got the ENT to write the order for overnight stay.

    So, while I'm not in 100% agreement with the endo's post-op plan, I AM incredibly grateful to finally have coordinated care that's taking our DD's unique issues into account. I can't imagine how upsetting it would be to have the kind of experience you describe, Ali!!
     
  11. dianas

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    I don't consider it malpractice. I just don't expect healthcare practitioners to know things that are outside of their field of practice. No one can be knowledgeable in everything. That's not realistic in my opinion. I wouldn't want my endo to manage a broken wrist or stomach ulcers either, he wouldn't have the knowledge, skills, or tools to treat those conditions in his office. There's a reason why most endo's want you to have a PCP or a pediatrician and also a reason why you consulted a pediatric endo in the first place.

    Pumps and sensors are something that only a small segment of the general population is going to have. It's a specialty area not a general one. There's a lot of valid medical reasons why it may be better to temporarily discontinue them during a hospital stay if you're in a situation where you can't self manage for a time or the hospital isn't set up to allow for self management and go on the hospital protocols during the stay. Or it may be fine to continue. Each patient, procedure, hospitalization, and situation is different.

    By the way hope all goes well tomorrow and your daughters procedure and recovery goes smoothly.
     
  12. Christopher

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    For me, the issue is that they removed a life sustaining medical device without consulting the patient. I don't expect them to be experts in all areas of medicine, but I would expect them to understand the medical issues a patient was dealing with BEFORE undergoing surgery and to be able to follow the instructions of the Endo (who IS a specialist) and also the patient themselves, on how they wanted this dealt with. These are medical professionals and they should have a modicum of common sense when dealing with patients.

    There may be situations where you would want to temporarily discontinue something but in this case there were clear instructions on how to deal with this and they did not follow them. Worse, it was done to them while they were under anesthesia and that is where I think the negligence lies.
     
  13. nanhsot

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    When my son had surgery, it was automatically removed and given to me. I was told it was to keep the area more sterile. He did keep his pump in though.
     
  14. dianas

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    Ali's circumstances were not what I was talking about but also clearly illustrate what can go wrong when pumps and sensors are used and staff are not familiar with them. The site loss could have been accidental in a busy OR. If it was deliberate then my assumption would be something unexpected happened with either the pump or blood sugars and my personal preference would be to have the site be pulled rather than to have them try to troubleshoot the equipment themselves. Now to not have alternative orders if it was deliberately pulled or they were aware the site was lost is not good. Also kind of hard to give consent during surgery and I don't think they'd stop and talk to family for something like this unless it was life threatening. Again a lot of assumptions on my part here but I've had such rotten luck lately I've had way too much personal experience with the inside of an OR:(

    I've had a couple surgeries where I've worn my pump during surgery and everything was just fine. No problems everything went smoothly.
     
  15. Christopher

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    Oh, OK. When you said you didn't think it was malpractice I thought you were referencing Ali's post and my comment about it.

    Yes I think you are making a lot of assumptions and neither of us really know why the staff removed the pump during surgery. My main point was that there were clear instructions pre-surgery that were not followed and post-surgery no one appeared to even talk to the Ali about what happened or why the pump was removed. If it were me, I would have been really ticked off.
     
  16. rgcainmd

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    How did surgery go?
     
  17. Snowflake

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    Thank you for checking in. I'm not good at writing short, but I will try!

    First, on the CGM: the anesthesiologist thought it was cool, and wanted it in the room. Around 5:30 a.m. before surgery yesterday, I had to bring my daughter down from a massive high caused by an overly conservative overnight TBR, as the surgeon had told us that she wouldn't operate if DD was over 300. Predictably the 5:30 a.m. correction had her flirting with a low by the time they were going to wheel her back to the OR around 7:15. Since she was NPO, the nurses started IV glucose, I started a reduced TBR, and the team was happy to watch the Dex for the very brief procedure.

    Second, on the pump, they did leave it on for the procedure and recovery, thank goodness! The nurses instructed me to use a seemingly random ICR that an endo fellow had generated, as well as month-old basal settings from our last endo appointment, for the duration of hospitalization, but they also said I could control the pump for bolusing. So I just left all pump setting as they were, and my husband and I have done our own thing with boluses, a little passive resistance that has kept her bgs well-controlled.

    We're only a day into recovery but it's definitely been the harder part. DD is still at the hospital with Dad, and it will probably be this evening before discharge. A few hiccups we've encountered in recovery:

    1. As megnyc predicted, the endo wrote orders, that seem to have been transmitted to the kitchen, that DD's beverages and frozen items must be sugar free. DD is also celiac. The kitchen had precisely one brand of frozen treat -- a sugar-free popsicle -- that was both SF and GF. DD surprised me by being willing to eat a few of them in the recovery room. BUT, then the hospital ran out of them before dinner last night, even though we made multiple calls about this particular item to DD's entire care team in the week leading up to surgery.

    So the pospicle, the key to the tonsil recovery, has turned out to be off limits to DD for the last 18 hours, which is highly aggravating. (Dad or I would have gone out to buy our own, but one of us has to stay with DD, and the other has been home with her little brother an hour away from the hospital -- this is where it would be nice to live closer to family!) I get the endo's logic about requiring sugar free popsicles, i.e., to avoid repeated bg spikes that might thwart healing, but it seems a little overly rigid in this situation.

    2. Also, to the earlier discussion about the Dexcom during recovery, this hospital limits kids to tylenol and oxycodone, no advil allowed, in the first 48 hours after tonsillectomy (or maybe all surgery, I'm really not sure). So, because tylenol wreaks havoc with the Dexcom, it has been packed away since she woke up yesterday. That's actually been ok, as DD has taken so little by mouth other than water that her bgs have been pretty much consistently in range. The hospital has her taking oxycodone under observation right now, in the hopes to better control pain so that she'll be willing to eat or drink more on her own and they can remove the IV fluids.

    On balance, this hasn't been as difficult as expected, and with the few exceptions mentioned, I've been pretty impressed with the coordination of care. I think it's going to be a long recovery week and our big goal will be to avoid having to go back for IV fluids if she can't cooperate with drinking etc. I'm hoping she'll be more comfortable and therefore more cooperative at home, and with the Advil-Tylenol regimen we can start tomorrow.

    Anyway, this answer went on far too long, but I do want to thank you all for your insights as we got ready for this experience!!
     
  18. dianas

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    They may not want to use Advil because of the increased risk of bleeding postop, especially with a tonsillectomy. Sorry about the popsickle mess. They should have called for alternate orders though when that happened or earlier for a backup plan as I think it would have been obvious that there wasn't enough to cover her hospital stay.

    I'd file a complaint with customer service after you're home since that could have been avoided. Celiac and diabetes is not unusual and they need to be better prepared especially when there has been pre planning for her over night stay.

    Hope your daughter's recovery continues to go smoothly and you're home soon.
     
  19. Ali

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    Yes to the above, the bad part was that post surgery no one bothered to explain that my pump had been removed or when or if they had done anything to replace insulin after removing the pump, they also did not bother to check my BG or have a syringe and insulin ready. I was the the one who discovered my pump was detached and started asking questions and no one had a clue. I was still a bit groggy from the anesthesia and if I had been a bit more drowsy it would have been several hours without insulin and without any checks. It really was quite insane. Given all the pre surgery instructions I was a bit more than surprised that the post surgery group seemed to be clueless about when my pump had been detached, if I had been given any insulin or given any sugar via an IV drip. i.e. I was completely winging it. That was the issue, I had no idea how much IOB or Carbs I had in my system post surgery. which would be a big issue no matter how you had gotten your insulin delivered pre and during surgery. It was also extremely surprising given that I was at a hospital with a renowned diabetes center. :surprise ali
     
  20. wilf

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    Good to have this thread as a precautionary example of how important it is to make sure EVERYONE involved in a surgery on someone with Type 1 D is on the same page.
     

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