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Curious Nursing Student

Discussion in 'Parents of Children with Type 1' started by UticaStudent, Jul 19, 2010.

  1. joy orz

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    We had a very good visiting nurse when we first came home from the hospital. She helped me organize all our new "stuff" in a way that made life simpler, and she watched the first time we diluted insulin. It was nice to have another set of eyes.

    On the flip side though, we live in a neighborhood of Boston that could be considered your target population. We've had many well meaning folks want to come to the house for different community "outreach" services and it can feel very invasive. I echo Lisa. Listen first.
     
  2. Melancholywings

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    We love LOVE our school nurse. She's taught me a trick or two, is very educated and has worked on advocating. I feel we've really lucked out. I love her so much that we wanted to sell our home this next year but are thinking of sticking around until DD heads off to middle school because the support means more to me than a bigger kitchen. She's very involved at educating herself.
     
  3. LARSMS

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    My daughter was diagnosed following a routine physical that showed elevated glucose. The pediatrician said he was referring us to an endocrinologist but said little more. I asked the pediatrician what the results were and what they meant. He just told me I needed to speak with the endo. I asked what I should do until the referral came through (which often takes a week or more) and he said just wait to speak to the endo.

    Since I have a cousin who is a T1 diabetic, I was not at all comfortable just waiting. I went online and looked up glucose levels and then went out and bought a meter to test my kid. Unfortunately I could not figure out how to make the darn meter work and my aunt and cousin who do not live nearby could not talk me through how to do it. Desperate, I went to a local clinic and asked if they could just please test my kid's glucose. I told them I would pay cash as an outside patient since they did not accept my insurance. They were so kind. They took me and my daughter to the back and showed me how to use the meter. They also invited me to come the next morning as their CDE was teaching a diabetes class. I was not charged for a thing.

    I went the next morning and while the CDE's class was primarily focused on T2s, she did spend some time with me after the class to talk about my daughter. While the CDE did not specifically say "your child has diabetes" she did not need to. When we discussed her BG levels she told me to call Children's Hospital immediately as I was going to need a great deal of support through this and Children's Hospital was the best place for us.

    So, while in hindsight I respect that my pediatrician did not want to speak about something he did not have experience in, at the time I was so scared and felt so powerless. The local nurses and CDE helped me with getting some basic information and steered me in the right direction to get my daughter treatment ASAP. In my mind they epitomized what a healthcare provider should be - that is someone who primarily cares about the health and welfare of the patient.
     
  4. KRenee

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    You asked, "Are the majority self-taught or how did you all become so educated?"

    Absolutely self taught and naturally analytical. I read a lot of books and listened to all the wise people on this forum. Our initial meeting with the endo and CDE, after being released from the hospital, was good. They were nice and gave me the most basic of information that got me through the first week. After that, I took the reins and started managing this condition in a way that shocked them when we returned a month later. What they teach is not enough, but a lot of people stop there and never learn any more.
     
  5. canadianmomto6

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    I 100% agree with this statement, at least from the experience that we've had. At our diabetes clinic, we were taught the basics, but unless I had initiated a discussion about things I had been reading we would still be operating under those basic principals and my son's quality of life, IMO, would be greatly reduced due to the restrictions of their original treatment plan. Their explanation, and I understand it to a point, is that they work on the assumption that some parents aren't going to want to put in the effort or aren't capable of handling the math involved in I:C ratios,etc. so they feel like they have to start everyone off the same way. I think it's a pretty broad assumption to make though when you only see a small snapshot of these parents/kids once every three months.
     
  6. kimmcannally

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    Yes, it would be really nice if they would sit you down and say "here are your choices.
    1) you can make sure your child eats a certain number of carbs at every meal and eats a snack between meals so he/she eats every three hours
    2) you can use some math to figure out how much insulin to give based on what your child wants to eat"

    I think most parents would choose the math! DS was always hungry right after dx. It would have been SO nice to know we had the option to feed him more! I found an online bolus calculator and used it to figure IOB long before we started pumping.
     
  7. UticaStudent

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    I don't mean to ask a silly question but I want to completely understand so I'll ask anyway. How did you get set-up with a visiting nurse? Was the visiting nurse referred to you though an in-patient hospital visit, through a doctors visit, or did you request the visiting nurse? Also, how many visits did you get with her before she didn't visit your house any longer?
    Thanks for sharing your experience with me! I am learning so much from all of you as you share so openly with me.
     
  8. UticaStudent

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    Was there a difference between what and how you were taught in the hospital compared with the endo and CDE? Do you remember having any education by a formal diabetic educator in the hospital? A lot of my research shows that education in the hospital is not adequate due to time constraints, lack of a formal educator, and other factors. Do you think this is an accurate statement based on your experiences?
     
  9. UticaStudent

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    I must say that I am extremely impressed to hear how active this ped endo physician is within the community in education, screening, and treatment. Thank you so much for sharing your experience with me!
     
  10. UticaStudent

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    Thanks for sharing your experience with me that is exactly the type of information I was hoping to gather. You are exactly correct when you say that the most dangerous health care provider is the one who thinks they know everything and is unwilling to admit otherwise. I find as a nurse that the best way to earn my patient's trust is being willing to ask them questions about their normal care routine and medical treatments and admit that I am unfamiliar with certain things and ask for the patient or their family to educate me. Your post helped me to confirm that my approach is respected by patients and family members alike.
     
  11. UticaStudent

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    Thank you so much for sharing your experience with me. How did you find the education to be at the Children's hospital? Do you get to work with a diabetic educator there or was your education done by nursing staff?
     
  12. kimmcannally

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    We spent three days in the hospital being educated. We were told that they could extend it another day if I didn't feel comfortable taking DS home and caring for him myself. This was Children's in Birmingham AL.

    Education was done by CDE and nutrition "lady" and a social worker. No education from nurses and I learned not to EVER leave him alone in the hospital.

    DS had a headache and the nurse had me test his BG. She said if he was LOW we would give him insulin!!! I repeated that back to her and tried to figure out why and how that would work. I didn't know anything really at that point so I said "he has sugar in his bloodstream and needs the insulin to 'unlock' it so he can use it?" She said YES.

    Not if he is LOW!!! Thank God he was at a good BG level or we would have had a disaster on our hands.
     
  13. chammond

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    We have not had a lot of experience with community nurses, but what I have dealt with through our public health nurse has been good. Our insurance company has a program where an RN would contact us every 3 months after his diagnosis, and that was pretty eye-opening. Her level of knowledge regarding T1 was very low. She asked if Logan (who was 7 months old) was obese, made many recommendations about his diet that were completely ridiculous and possibly harmful. I was shocked. The doctor and Nurse Practitioner at our office are amazing though. Usually they are asking us about current diabetes news and treatments. They are very open with the fact that they don't know all there is to know about T1, and I wouldn't necessarily expect them to be, as long as they know their limitations and are willing to send patients somewhere that does.
     
  14. UticaStudent

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    When the nurse through your insurance company would contact you what kind of information was she gathering? I hope this isn't prying too much but I was just wondering how this nurse would be considered helpful to you as a client and I'm having a hard imagining that. If you don't mind sharing further I would appreciate it.
    Thanks!
     
  15. kimmcannally

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    We have the same thing - a nurse calls to check on DS every month or so. It's not very helpful - a waste of time really. But having said that, she did suggest I keep track of his A1C's, which I hadn't thought of keeping a record of. And she mentioned that his eyes need to be examined yearly, so we are getting that done tomorrow when DD and I get ours done.
    So, the reminders are helpful. The information about how to care for him is not. I get that info from the endo and CWD :)
     
  16. jcanolson

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    We had signed up for "assistance" from a nurse through our insurance company. They were supposed to call once a month to check up on us. They obviously had NO clue about Type 1 diabetes. One nearly paniced when she asked what the last bg was and I told her 230. She was determined that I needed to call our dr. Then I went to a meeting last year where the nurse who headed up a major insurance company's Diabetes call center was speaking. She told the room full of people, mostly Type 2, that they needed to make sure and take care of themselves so their Type 2 diabetes didn't BECOME Type 1 diabetes. We cancelled the "assistance" from the nurses at the insurance company after that.

    I guess that would be our main experience with community nurses.

    We were trained by an endo and his NP. Good basic training, but if I had not continued researching and learning, this would be much more difficult. Interestingly, my daughter was in the hospital awhile back and the people across the hall were going through diabetes training. Their teen had just been dx. I couldn't help overhearing the training from the nurses (the endo is no longer in town). It was horrible. I gave the mom this web-site. I only hope she found it.

    As someone else has said, listening is a major key. It seems that so many of the people in the medical community feel that they know-it-all. When those of us who fight this disease for our kids everyday can quickly tell that they don't know anything about Type 1.

    Good luck!
     
    Last edited: Jul 26, 2010
  17. nanhsot

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    The CDE at the hospital and at the endo office have been the most helpful, however even with that I do believe that the main reason we have good control today (knock wood, so far) is due to self education and this board.

    I work for a home health agency and we have a CDE on staff who has offered to help me and who teaches classes. Her main knowledge is in Type 2 as that is what she sees most frequently in the community. I believe I have taught her a thing or two about Type 1 actually! She's well educated, just not a lot of practical experience with Type 1, I know of exactly zero other kids in our small town, I'm sure they must exist, just don't know them (other than one in a neighboring town whose mom taught me a ton that first week!).

    Bottom line: the most helpful nurse has been at the Endo's office and she has Type 1 herself, which shouldn't matter, but does. We haven't used "community" nurses.
     
  18. chammond

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    Our insurance company had various programs for people diagnosed with chronic conditions. They also would call regularly after my older son was diagnosed with asthma. Basically, they would call to provide information and to make sure that we knew and felt comfortable with the treatments that needed to be provided, and to help with education about the condition. Many of the things we were advised by this nurse were quite strange in my opinion. She insisted that we needed to do an inspection of his feet daily and to wear shoes all the time. I felt this was a little strange considering he was only 7 months old and was not even walking. When I pointed this out to her, she pointed out all the complications regarding infections and amputations due to diabetic complications. She also advised that we contact our doctor to help us put him on a strict diet and restrict calories and carbohydrates. I felt that this advise was not only ridiculous but also dangerous for a 7 month old baby who was not overweight or unhealthy other than the T1. After being polite for several months I advised them that I was not interested in receiving calls from them anymore because most of the advise provided directly contradicted all advise given by our endocrinologist.

    I agree with many of the previous posters that much of the education we have recieved has been self taught or learning from other parents on this site. I admit that I haven't read as many books as I should, but all the books our local library carry are very geared towards T2, and for some people it could be dangerous because they don't differentiate between the types. We take our son to an endo 8 hours away at the Barbara Davis Center because they are excellent and have provided great support and knowledge. For us it is worth the trip to have that support network. Of the many websites I have joined and read online, this is the only one I regularly use.
     
    Last edited: Jul 26, 2010
  19. UticaStudent

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    From reading the posting you all have been so generously sharing with me on this board I am getting the idea that insurance company nurses are mostly calling to check in on the patient but not really doing any education during these calls. It also sounds like the information these nurses are sharing with the clients is mostly scripted and is not individualized to the patient and family.
     
  20. UticaStudent

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    Do you all think that nurses need more training and education on Type I diabetes? Do you want education by nurses in the hospitals and/or doctors offices or would you rather the training be completed by a certified diabetic educator and staff who work in the endo office only along with the teaching you do for yourselves and others through this website and books?
     

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