We attended a class at the diabetes clinic at Children's in St Paul last night, called Pump 101. It was an information class on the insulin pump.
Hannah was pretty bored at the class, but I think she was able to comprehend some things.
There were, I think 11 families in the class, it was a big class. There were a couple of girls who looked to be her age, a couple of boys her age, a few girls/boys looked to be a bit older 9-10 yrs and then there was an older boy, I think about 16-17 and and older girl, about the same maybe 14-15. The class was informative and yet almost too much information when I thought I had this diabetes stuff down pat. I learned a many things I didn't know. ( duh!).
Being back in St Paul and in the clinic again with other kids who have diabetes in the same room as us, just brought back all the overhwhelming thoughts of how real this disease is in our lives. We do what we have to do daily for Hannah, and it's normal for us, but knowing and seeing other kids who deal with the same things daily as we do, just makes it more real. There really are many families who do just as we do with Hannah. I'm pretty sure the upcoming Walk for a Cure will have me overwhelmed and very emotional just being surrounded by all the kids with diabetes and families who deal with this like we have to.
The class was led by a nurse educator,and using all the terms and diabetes language just made it more real as well, like I was back in those first classes at the hospital hearing all this stuff for the first time.
Getting on the pump is a process and should not be rushed. It can take 3 months or longer to actually get on the pump.
Our next step is to fill out some worksheets and send in a weeks worth of blood sugars and doses to the clinic. A diabetes nurse educator reviews the levels, and then there is a phone conversation about the results and setting up the next class "Pump Prep" I'm hoping we can do that one in Minnetonka on more of an individual basis, but if it's a class in St Paul, or whatever we will do that too-- at this class she will get to try a pump for 2-3 days. I still have questions, about which pump we want, there are 3 to choose from. Steve was not able to attend the class after he told me the day before to go ahead and schedule it. He had a job to finish up on a nice day, so Hannah and I just went, I figured for this class I didn't want to postpone it any more. There were a few kids there with only one parent, so I guess it was ok.
So OUR next step in this process, is I want to wait until her diabetes check up on Jan 14 and talk with her endocrinologist and nurse educator more on the pump, specific to Hannah and which one would be best for her and get all my questions answered, before we proceed. It is also her 1 yr check up, so I'm hoping Steve will be able to join us for this appt. He shouldn't have too much going on in January.
At that time I will probably have her worksheet completed with her weeks worth of numbers and maybe set up the next class at that time.
After the Prep class, is Pump Start and that is after her endocrinologist approves the pump for her and sends in the prescription. Our insurance issue needs to be addressed, as we are due for renewal on our program in about February, I believe. We will then get the pump in the mail from the manufactuer, and then we bring the pump to the "Pump Start" class, also hoping to do that in an individual or smaller group setting at the Minnetonka clinic.
It's alot of work to get on the pump initially, it will feel like starting over, learning new things, learning how to work the pump. Getting on the pump will elminate Lantus or any insulin injections daily, and the pump can be programed to give smaller doses, as small as 1/10 of a unit or 1/100 of a unit. It is more precise dosing, and therefore better blood sugar control. The pump will be giving her tiny doses of insulin all day long depending on her needs, plus she will need to dose for all carbs just like normal.
The injection site needs to be changed every 2-3 days, because skin irritation will occur if left in one spot too long, and the insulin in the reservior can only be left out and againest the heat of the body for 2-3 days. The needle is small, like a syringe, and it's just like a catheter. The needle is inserted just under the skin, and then is removed leaving only a small plastic catheter in the body, which is taped in automaticly very securely, the site is waterproof, but the pump isn't. ( there is one of the 3 pumps that is waterproof, so we'll have to see if that one is the best fit for Hannah). So it will need to be taken off in the shower or swimming, and can be dissconnected for up to 2 hours, but frequent blood sugar testing needs to be done after and possbile corrections done for getting "high", unless exercise is involved, then carbs maybe be needed. The pump is connected to the injection site by tubing.
During the first 2 weeks, testing blood sugars will be every 3 hours, even during the night. Until a pattern of good doses and numbers occurs. More frequent blood sugar tests may be needed for awhile. Because she will no longer be on basil or long acting insulin (Lantus) there is more concern for DKA ( Diabetic Ketoacidosis, ie: ketones) which is the state she was in at diagnosis. If she is not getting her insulin or the site or tubing kinks or under the skin becomes clogged or occluded she can go in to DKA in a matter of 4 hours. It's pretty quick and that requires hospitalization..... it's rare but this can happen, which is why she needs her pump 24/7, even while sleeping. So they recommend not changing the site before bed, giving at least 4 hours possibly longer to make sure that before she goes to bed that she is not in DKA.
Hannah is not too thrilled to go this pump route and doesn't see the advantages yet--change regarding her diabetes concerns her some, and before we do this everyone needs to be on board with this decision. She is only 8, so as parents we do have more say as to at least give it a try along with her doctors recommendation. In the long run it will benefit her more and the arguements between her and I regarding her injection sites and the time it takes to accomplish an injection will make everyone happier with the pump in the long run. So I guess my goal is to possibly have her on the pump this spring, and maybe even wait until summer so we have an adjustment period before dealing with school and early mornings and such. We'll see how her appt. goes in January and go from there.
Tomorrow, December 3, marks the day, one year ago that would change our lives, Hannah's life forever-- Hannah's diagnosis of Type 1 diabetes. Cant believe it has been a whole year already, but we have learned and come so far. Lately her blood sugars have been pretty good and that considerably helps her moods. We do get the occasional highs and lows and that is to be expected.
"Vigilance is imparitive, perfection impossible."
Hannah and I do have our moments, where she is wonderful, but in an instant she can turn from nice to naughty and she suddenly gains the attitude of 14 year old. I am not ready for that, and want just an 8 yr old at this point. Partly it is her personality and relationship with me, and partly it is the diabetes affecting her moods. We are working hard at a balence between it all.
samples of the 3 types of pumps available to her at Childrens:
MiniMed Paradigm made by Medtronic
One Touch Ping made by Johnson and Johnson ( waterproof)
Also available is the OmniPod, there is no tubing involved in this pump, the pump sits right on the body, and is a newer type of pump.
