Things you need to know when heading to the hospital

Your child's favorite toy.

 

Going to a hospital is scary.

Please remember that all the nurses and doctors out there are professionally trained medical people. And they are people, and by and large they care a great deal about providing the proper medical care for everyone.

Are they diabetes experts? Not likely. But our one and only post-dx'd er stay was made better by treating everyone with the respect they deserve for the difficult job that they do.

Andrew had low BG, ketones, vomitting. I knew he needed insulin, but didn't agree with the ER dr's orders. By speaking to him respectfully and asking him why he was doing things and explaining my perspective, we were able to work it out.

He called my endo (or the Children's Boston endo on call, I don't remember), from the number in my cell phone and Andrew got the treatment that was appropriate.

I realize not everyone has such a good result, but I know my experience could've gone either way, and it was my attitude that made the difference. I also realize that sometimes the best attitude in the world won't help, but I'd just like to caution parents to begin with the assumption that everyone who comes in contact with your child wants to do right by them.

ETA: Wish I would'vd had my own sweater, book, and toothbrush. Definitely take own blood ketone and glucose meter, and other supplies.

 

My diabetes educator gave me a copy of an ER protocol named the Diabetic Keto Flow Sheet and said to bring that with us if we ever have to head to the hospital and hand it to the ER doctor that first looks at him. In Ontario we can order free copies of it at: http://www.serviceontario.ca/publications , item #013308.

It's quite the complex flowchart for a newbie but apparently exactly what an ER physician should use to determine the course of action. Given that its an official health ministry document developed for use in Hospital ER's and not some internet quack printout they might even appreciate the fact you handed them one.

edit: its available online as a pdf here: http://www.health.gov.on.ca/english/providers/pub/diabetes/child_poster.pdf

 

None taken - and I recognize that in myself from before diabetes!! You are your child's best advocate, and if you are a parent who is on top of how to take care of your child's diabetes, the med professionals should be ok with you taking charge of care. I would definitely call the endo and ask they talk with the peds doc and let them know you are very knowledgeable in care and to work in coordiation with the team.

Hopefully we dont need this sticky too much

 

Bring your own numbing cream and/or insist that the techs go find some before they start sticking your kids! When we were admitted in September for diagnosis at a very, very good childrens' hospital in Atlanta, the first afternoon we were there, up comes a tech to take blood from my 7 year-old. It was the first we had heard that they were even going to be doing a blood draw. I stopped her and insisted that she go find some EMLA or LMX and that she wait until it take effect before she got started. We did and there was no pain. I told them it was simple - 'JUST BE FAIR TO MY KID, OK?' But I had to get quite cranky with them. Never stops me, though

 

Dont forget if your child neds surgery (in an emergency situation, or a test) the docs sometimes need to be reminded that the glucose needs to be tested intermittinly....It is the er that throws off the protocol, and requires you to get the endo on the ball with orders for the amounts of insulin, glucose drip etc.

Em was scheduled for a biopsy of thyroid, and the surgeon/radiologist was unsure of the protocol for checking her blood sugar, for a brief moment i thought i had to stand in and check it was the radiologist who pulled it all together and got the orders from the endo....

Bring all supplies as always...and maybe even the section of pink panther book on illness...

 

Bring all your own supplies. Call your endo yourself. Check to see which hospital they would like you to go to. Bring comforts from home for you and your child. Pillows, books, blanket, toys, gameboy, etc. You can leave somethings in your car until you need them.

My son was diagnosed 1 month after I graduated Nursing school. I knew nothing about type 1. In school they told us if we go into Pediatrics we will learn about it there. Most Nurses and Docs are somewhat clueless on it, but the good ones will take time to learn from you.
I can see how note taking can be taken the wrong way especially in a busy ER situation. I work on a med/surg floor, I see it alot and I try to acknowledge it. "Is there anything you need me to find out for you?" Sometimes they just want to know what meds they are taking, or are confused with med times, or generic versus brand names, etc. Some of my very ill patients take notes cause it is the one thing they can do to be active in their care. They want to control one thing when everything else appears out of their control. Many of us parents feel that way.
Nurse are suppose to be advocates for their patients. I know alot that aren't.

 

I bought a rubbermaid bin to hold all of my emergency supplies in it...so all I have to do is toss in a lunch pack with ice pack and insulin/ lantus/novolog.


thanks for sharing all of your tips of Er or hospital visits.

 

Kyle has been hospitalized once since dx and there are just a few things I would do differently. First and foremost, I will definitely take him to his endo's hospital if/when it should happen again. Huge mistake on my part. I panicked and had his dad take him to the nearest ER as opposed to Miller Childrens where he was dx'd. I guess I just thought after the IVs rehydrated him we would be on our merry way. Not so much. His endo wanted him admitted, which meant a nice little ambulance ride to the hospital that I should have taken him to in the first place. Nothing like spending 10 hrs in an ER cubical........part of those while waiting for a bed, the other part while waiting for a ride, even if that ride is the coolest thing a 10 yr old boy has ever had before lol

I agree with those that say to make sure you take all of your own supplies. Since we were in the ER for so long, I was basically on my own taking care of him. They finally let him eat and he was starving as he hadn't eaten all day....a nurse brought him a sandwich and maybe some chips I think. So I just handled it like I would at home, they didn't ask any questions. About an hour later a nurse came by to check on us and wondered if he had had any insulin that day.........I was thinking well duh we fed him didn't we? I realize that not all nurses and doctors specialize in diabetes care and that's ok with me just as long as they don't have an issue with us taking charge of that part of it. For the most part, all of the medical personnel I have encountered since Kyle's dx have been awesome ...I appreciate what they do and for us. As parents, having a positive attitude goes a long way too. I just always keep in mind that it's about Kyle and what's best for him.

 

This is a product that will require an order from an MD/PA/NP in a hospital setting to use. It's not as simple as just going to find it and a tech can't even get an order from it. So in order for a tech to get it they have to go find the RN to call the prescriber to get an order for it, wait for the prescriber to call back, put in the order, wait for the pharmacy to send the cream up to the floor, have the RN go apply it, then the tech can go draw the blood.

Definitely easier to bring your own, or insist the first time you see the doctor that they include emla as a "PRN" order.

 

My only hospital stay after dx was for gallbladder surgery.

I think what I should have kept in mind then was that you have the right to decide that you need a different doctor. If I had it to do over again, I would have demanded a different anesthesiologist.

I brought my own insulin and meter, used their meter too. Good trick: if you check your blood sugar right before they're planning too, they might not check yours. Yay! Also, bring your prescriptions because they like to check that you're injecting what you say you are.
I found that the nurses were quite willing to follow my instructions to inject me. One of them thanked me because she'd never used an insulin pen before.

 

Hi,
Not too sure if it's a UK thing but we HAVE to take child own insulin, inhalors creams etc etc. Maybe the nhs here?
It's frowned upon if you forget something!!
They are not keen on you using them as you would at home mind, but they take everything and put it in their friges/stores to use when needed.

 

Yeah, I am an RN, and I will go ahead and tell you that if you give insulin that the doc has not ordered, not only can your insurance deny coverage for the hospital stay, since you are going AMA, against medical advice if the nurse reports it, and she is obligated to.... you can bring about some child safety issues, and find yourself with some legal repercussions and the department of human services or worse yet, child protective services on your case.

I know we know more about the home management of diabetes, but once our kid is sick enough to be in the hospital, there are things that we are not schooled on.

If you really think your kid needs insulin right away, and do not trust the doctor to put orders in in a timely way, then start making some noise, this is a time to advocate for your child, and part of what advocacy is all about!

I beg of you all NOT to do anything that the doc has not ordered...

 

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In Kaylee's case in March 08, they had left all insulin dosing up to me.. why, I don't know.. I was OK with it, I actually thought they were going to TELL me what to give her and I would just work the pump, but seriously they left ALL dosaging up to me.. They made so many mistakes from the time we came in, at 10:30am, they didn't do anything until 5pm that night, Kaylee ended up in DKA (I had been talking with her endo periodically through all this so they knew what was going on, but she isn't associated with that hospital so couldn't call and give orders, she wanted them to call her...) anyway, They had the hospital lawyer speaking to me the next morning. The night she was admited the Pediatric doc. on call didn't even come to see her. I asked that her endo be contacted numerous time, they failed to do it. I could go on and on about their mistakes, they also didn't end up charging us for her stay. And I've spent numerous times visiting them, they've changed their protocol. They did get upset when Kaylee went low and I gave her a glucose tab, she was in the 50s and they wanted the lack of insulin to bring her up (they disconnected her from her pump) just as I got her ketones under some sort of control.. she went another 5 hours without insulin, and ended up with 5+ ketones again (after I had worked all night to get them down to trace.).. they would let me give her anything (juice box, food, more glucose tabs) and give her insulin. I seriously almost signed her out and went to another hospital. I wouldn't advise ever to go against dr's order. My experience with Kaylee, I hope, will never ever happen again, to Kaylee or anyone else. With Kaylee, I had to go against dr's order (NPO at the time) and give her something, the glucose tab, she was dropping low and they didn't do anything about it.. If I had to do it again, I would. I don't ever plan on going back to that hospital (one of the top hospitals in the state, and where I had both girls.. I was TOTALLY, and still am shocked at her experience while there!). But if I were in that situation again, I'd do it all again (actually, I would have left and gone to another hospital if I KNEW what we were going to deal with for 3 days.)

I DID bring all Kaylee's supplies with me, but not enough, I ran out of ketone strips and the hospital couldn't get any. The cde associated with the hospital ended up brining over a few boxes. next time, I surely will pack more of those, expecially if ketones are the issue we are headed to the hospital.

Be an advocate, and speak up when you know something isn't right.

 

I also had my diabetes care left up to me in the hospital. They (nurses) asked ME how much insulin I wanted. I had an IV in my hand so they did the shots for me, but I picked the dose. Even right after surgery when I was groggy.

 

I've had some good hospital care, I've had some poor hospital care. The best hospital care I ever received was on the peds unit where my daughter spent her post-diagnosis period. Not only were all the nurses competent, but they had a CDE on the unit a couple of days each week and when she wasn't there on CDE duty, she was working as a staff RN.

I learned from her, and continue to learn from her, more than I have learned from the pediatric endocrinologist.

It really can happen. but for sure, it only makes sense to be prepared to manage your child's diabetes. Its one of those things that she and I are doing together and right now, there aren't many people who know what we do about HER disease and its management.

 

Thanks for that post!
I appreciate that, I used to see a lot of bashing of hospital staff for not knowing how to use an insulin pump, or not using the same formula for carb counting, etc.
We have to understand that these medical professionals have to follow thier hospital protocol, and those things are protocol because they work. You might not understand why your child is getting an infusion of insulin AND dextrose, but while we as parents may understand some of the intricacies of DKA, or Hypos, the hospital staff should be well versed in acid base balance and know well how easy it is to throw someone off into the wrong direction.

If you are confused, ask them to explain! They should, but dont go barking at them, they are humans too, and they do know how to do thier jobs. (usually)
Great post.

 

But not always. When DS was dx, I had a nurse tell me she was going to test his blood when he complained of a headache. If he was LOW, she would give him insulin!

Thank God he wasn't low!!! I didn't know better at that point - I said "so if he's low the insulin will "unlock" the glucose in his blood so it can get into his cells?" (that was the only thing I could come up with and I was learning how insulin "unlocks" glucose so the cells can use it). She agreed with me!

 

I think perhaps the best mindset is to approach things as an equally prepared partner in your CWD's hospital care. Nurses take a lot of sh#t for implementing doctor's orders and hospital policies---if something is going wrong, insist on talking to the MD who made the order. You MUST be willing to stand toe-to-toe and eye-to-eye with the MD and have a fair discussion about the issues you're disagreeing on. And you may always insist on a timely second opinion if you can't accept the MD's bottom line. All you need to do is to decline any intervention your nurse is about to make until you can speak directly to the MD---that keeps the nurses out of the middle and able to care for your CWD without any misgivings around what are essentially MD-parent disagreements.

And if you're not feeling welcomed to make comments/observations, every hospital has a patient advocate to facilitate those interactions. Call those people.

 

last of understanding basics

Reminds me of the time I took Fred to the pediatrician for a regular sick visit when he was sick a couple weeks ago. I mentioned his bg levels were running high because of the illness. His reply was "well maybe you can cut back his insulin by 10 or 20%." ???
These hospital horror stories scare the crap out of me. Thank goodness we live in an area that has a Children's hospital that is not only affiliated with our endo, but has a whole floor specifically for diabetic pediatrics. That was where we ended up when he was first dx. And that is right where we will go if we have issues. Hope to God that does not happen.

Thanks so much for all this input.