Wednesday, October 27, 2010

Vigilence Is Key

The last few weeks has been a rocky road for us as a family. Battling lows, then battling highs. Now, currently, battling illness related ketones and consistant highs because of illness and diahrea.

I have kept something that has been going on with us "on the down-low" since the day Lenny fell in school. I only told a select few people from the "D community" of friends I have on facebook, not because I don't trust all of you, but just because, well, would you want to try to repeat a story to over 100 people? LOL!

I haven't posted much about this on my wall either. But, now that it seems the metaphoric storm is over, I wanted to share something with you.

As a mom of a diabetic parent, my #1 priority is to be sure my children are safe and healthy, in school, at home, and away from home.

That said, when I feel as if my "control" over my child(ren)s medical conditions is being limited, it upsets me.

First, let me start off by saying, I am fully aware of how school nurses must abide by laws, regulations, and policies set upon them. I am also very understanding about this. That said, I do not blame the school nurses involved with Lenny's diabetes management for why things previously were so difficult. I do not blame them for asking for doctor orders for the changes and "last minute decisions" I have had to make over the last couple of weeks to prevent lows from occurring, when I needed to deviate from the original Diabetes Medical Management Plan we had set up at the beginning of the school year. It isn't their fault, they were just following the laws, regulations, and policies they should be following.

Does this make it less stressful for the parents? NO! In fact, in my personal experience, I think it made me MORE stressed!

So, all that said, here is what has been happening over the last few weeks that I have said very little about on facebook or anywhere else.

As you all may recall, Lenny fell in school one day a few weeks ago. The nurse called me and told me about it, said he looked confused, so she checked his sugar and the meter read he was fine (if I recall correctly, maybe he was even a little on the high side). We played it out till snack, and by snack time, he crashed... hard. The next day, a similar situation occurred. Although, Lenny did not fall that time, he was still crashing hard, and told someone he felt low. They checked him and his blood sugar was 127. I told them to give him 2 glucose tabs because I was seeing a pattern with this, and he still had insulin on board, and without the tabs, he would crash again by snack like he did the previous day. They did so, then asked me later if I could get the school an order from the doctor for that. I did. This pattern had gone on for about a week and a half. I did make some changes to his basal and I:C at breakfast, as our endo suggested, and things worked out. However, I wanted to put him on a temp basal at lunch one day to prevent the dinner time crashes he was experienceing. He has lunch, then 40 minutes of gym, then 20 minutes of recess, then afternoon snack. All the activity after gym was causing delayed hypo reactions after snack, despite having a 15-20 gram carb snack.

Long story short, I wound up having to get the school 4+ doctor orders for various last minute decisions for, what I call, "preventative maintenance" purposes... in 2 week time frame. Some days it was getting 2 school orders in a day, or one one day and another the next. It was absolutely rediculous!

On one of the more high stressed days, I must admit, I exploaded on the school nurse for asking for another school order. I did apologize later, because, I know it is not her fault and she did not deserve it. She was just following orders/laws, etc. She was just doing her job.

I asked her, "What law states the doctor can not put "Per moms request" on a school order for medication"

It was the PA Code: Professional Nursing Law is what I have been repeatedly told regarding this, since MAY!

Since May, no one has been able to tell me where in this particular law I could find that it states doctor orders must specifically state dosages for medications. So, I went researching. The nurse did her own "investigating" too, by contacting school nurse consultants and such and talking things over with me.

For the last two weeks, I have been doing google search after google search. Speaking with other "D-moms" both within the state of PA and in other states, etc. I had also contacted places like the "Bureau of Special Education's Consultline, A Parent Helpline" , PA Bar Association, and tried getting in contact with an attorney just for the pure and simple reason of trying to have someone with legal knowledge explain this particular law to me and verify or nullify my understanding OF the law. I contacted an ADA advocate about it over the summer as well. I pulled out as many stops as I could to educate myself on this law!

Determined? Absolutely!

I have so many .pdf files on my computer regarding this, you wouldn't believe it!

Then I got a phone call from our endo late in the evening one night last week. It was like 7:30pm when she called... totally caught us off guard LOL! She apologized for calling so late but said she was still at work and received a revised DMMP form from the school nurse, with different "parameters" for hypoglycemic treatment. It kind of confused her because I had never mentioned to her what was going on. I told her that I was trying not to involve the endo's with it just yet until I learned more about this particular law and parental/child rights regarding it. I told her everything that had been happening, and expressed my concerns with the current DMMP plan we set up before school started. Told her that the current DMMP plan does not allow me to make split second decisions that could prevent a hypoglycemic event from occurring under the parameters set in place on the DMMP plan, that I needed more flexibility and control over situtations. Explained the hypo events we had had over the past weeks, and told her I can not continue to call Childrens Hospital on an almost daily basis over minor changes and tweeks that need made for "preventative maintence" purposes. I also told her that I had contacted an attorney to learn more about the law, from a legal specialist. When she heard that, she sounded very impressed that I had taken this route. She did ask if I had contacted an advocate from the ADA and I told her that I did back in May, but didn't feel confident in what I was told in regards to all of this, so I wanted to get it straight from an attorney to be 200% sure I knew what was going on with this law. She told me to keep her posted on my findings, and that this could very well help many other families!

I wasn't too happy that the school nurse had emailed a new DMMP over to our endo without talking with us first, I must admit. She did call me the next day though and mentioned it and said she just wanted to get the doctors input on it. The school nurses have been absolutely wonderful in regards to keeping Lenny's best interest at heart, and doing what needs to be done for his diabetes. Granted, I wish they had contacted me about this first, but, I also know that if the doctor DID sign that prior to my knowledge... it would have come to a screeching hault asap lol.

After discussing all of that with the school nurse, I understand why she did what she did, may not be happy with it still, but, I understand.

We had shared notes with the school nurse and vice versa to see where we could come up with a mutual agreement that would still be within legal limitations.

I told her that I could not understand why other area school districts were able to give the parents more control but our school district is being so particular about this state law. All schools in the state must still abide by that law if it in fact states things as they are understanding it. She said she would contact other area schools to see what they are doing to be able to work with the parents.

That leads us up to today.

From 8am till about 11am I was on and off the phone with the school nurse, discussing how we could find that much needed "happy medium". She had spoke with the other school districts and it helped her to come up with some ideas and alternatives that would still be within the laws and regulations.

Then, I told her about this .pdf thing called Diabetes in School Children with a DMMP plan and other sample forms that I had come across that was designed by the PA Dept of Health and Diabetes Prevention & Control Program. Told her that it has a line in there that states "Parents are authorized to adjust the insulin dosage under the following circumstances:_____". I told her that this is about a 4 page document, but is sooo specific about all aspects of diabetes management, including for children with Type 2 diabetes, those with Type 1 taking injections, as well as those on the pump, this one might be a better fit for us.

After discussing it all with her, and finding out that appearently this is the DMMP plan that many local D-parents use in the surrounding school districts and it works out for them, as well as is legitimate under the Nursing Law, she said she would feel comfortable with it, and to talk it over with our endo and if she feels comfortable with it, then go ahead and fill it out and have it signed so we can enforce it immediately. She said since she actually has that exact 54 page "book" that I got this form from (I emailed it to her for her to cross reference and she actually does have it... I seen it at the trainings before school started LOL!), that when she presents the new DMMP plan to her supervisor, she would be sure to let her supervisor know that this is where I received this specific DMMP form, that this is where I referenced it. She said she would tell her supervisor that since it was from the PA Department of Health and the Diabetes Prevention and Control Program, that she is comfortable with it. She said our original DMMP plan that we had set up before the school year started was actually excerpts from this 4 page one, that she was just trying to include the most relevant parts pertaining to pump therapy as well as hypo/hyper, ketones etc... but she didn't realize the detail that she was condensing. Honestly, had I been in her shoes and seen the vast amount of coverage that this 4 page DMMP included (in regards to children that take pills for their diabetes, etc), I probably would have thought the same thing she did, so, I really don't blame her for trying to condense it down to something more individualized.

Anyway, Lenny had his appointment today with the endo, and we went over all of this. We created a new DMMP using this 4 page form. I also gave the dr some of the information I had collected in my research over this law, as well as emailed her the rest of my information regarding it after I got home. Hopefully this will help other parents, atleast in the state of PA, in the future. All has been worked out, and I think things should go more smoothly now.

As I get a chance, I will post links on another page on the blog to my findings regarding the PA Code: Professional Nursing Law, as well as other documents that may help parents in the state of PA gain a little more control over situations with their childs diabetes in schools.

As for Lenny's diabetes check up. His A1C was 7.9. Thats the highest it has been since diagnosis... however, he has had several days with ketones over the last 3 months, due to illnesses since starting school. He also had ketones this morning as well, so, taking that into consideration, he is doing pretty darned good! They gave us some angled infusion sets to try out to see if they would help open up some more site locations for us as well.  All in all, a pretty darned good day, even with the ugly show of Ketones first thing in the morning!

I don't think he will be going to school tomorrow though. He woke up at midnight tonight with a very bad case of diahrea. This explains the ketones yesterday.....viral infection, again.

So, the moral to this story is... Vigilence and Determination is Key. Do your research, stick to your guns, unless you find out for sure, without a doubt, that what you want to see accomplished is against the law. And, don't forget, communication and cooperation with the schools is very very important. We can't just go in there guns-a-blazing. We must be able to try to work with them, keep communication lines open, but yet, keep our children's needs and concerns at the forefront. It's yet another balancing act we must learn to manage.

     In Control: A Guide for Teens With Diabetes (Juvenile Diabetes Foundation Library)


Meri said...

I applaud your understanding...but since I'm not involved, can I say what the nurse is putting you through is BS?

Looks like we have the opposite problems. My boys don't have a nurse at school, (well, she is there one morning a week.) And your school has the bolus police. It just isn't right.

Sugar Free CandyLand said...

Thanks Meri! It took a LOT of calming down for me to understand their side of it.

Lenny's school district has 2 or 3 nurses that drive from school to school to try to be there for when the children need them. That said, prior to this school year starting, there wasnt a nurse in his building for the first 2 hours of the school day. I pushed for Lenny to have an aid follow him around school to all classes and she rides the bus to and from school with him, and walks him home from the bus stop, and walks him to the bus stop every day. They refused to give her the responsibility to do his diabetes management needsthough, except for glucogon administration if needed while on the bus, and she is allowed to check his bg on the bus if he says he feels low, and if he is low, she is allowed to give him glucose tabs. However, this took a LOT of work for me and the school to come to this agreement. They originally wanted me to change insurance to put Lenny on medicaid since our insurance (CHIP) would not pay for an aid to be in the school with him (they will pay for home health aids but not ones for in the schools, because of the Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act... they knowit is the schools responsibility to do that). For whatever reason, medicaid, atleast in my county/state, will pay for a health aid in schools as well as home health care. THey wantedme to change ins. to medicaid so that medicaid would pay for an LPN to follow him around all day and do all things needed with his diabetes. I refused because our insurance already pays 100% for all our stuff, except an aid in school, without any copays. I seen no benefit to us changing the ins. So, they hired this current aid, she watches for signs of hypo/hyper while at school, and on the bus she has the ability to give glucogon if needed, check bg if needed, and give glucose tabs if needed. SHe can only administer the glucogon if she calls the school nurse or 911 first for medical proceedure directions for it. I was fine with that, atleast he was opening up the availability of glucogon to him on the bus, as opposed to the latter. Now, as well as the aid, they have also outsourced/contracted an LPN to come in every day for 2 hours in the morning where there is otherwise no nurse available, to do everything needed for him for snack times, treat hypos, etc. Is the school paying double? I think so, but atleast Lenny is totally covered from the time he leaves my house till the time hes back home! I dont know about your state laws and regulations, but, this might be some food for thought for ya.

Meri said...

I see children with disabilites...that NEED aides, be denied them. (Kids that are way worse off than we are.) California is in such bad shape are being pawned off to schools that are poor, because they get federal money. We work it out, but you are beyond blessed to have an aide with him all day. Good for you for fighting for that!! But for the nurse to question your instructions because it isn't written by the doctor? That is just so wrong. You should always be able to have the last word. I hope it all works out and the nurse gets the fact that you know better than anyone what your child needs.

Have a wonderful weekend with your family!