Friday, February 15, 2013

D-Talk: Big changes.

We met with our new pediatric endocrinologist on Wednesday.

Long story short, she changed every prescription, dosage, and process we knew (from our short three months of experience).

It has been overwhelming, and I feel like I'm re-learning everything.  It feels very similar to the information overload we experienced as we left the PICU.  However, I definitely feel like we are on the right track to improving Jameson's health here.

We are no longer using the long-acting insulin, Levamir.  That was switched to Lantus. 

We are no longer using the quick-acting insulin, Humalog.  That was switched to Novalog.

The Novalog is not administered through the pen we have been used to using.  I'm sure that regular Novalog is, but Jameson is now on a diluted Novalog dose.  The insulin we have is 1/10th the strength of regular insulin.  At first that seemed really weird to me, but it makes sense, now that I understand it!  With the dilute Novalog, we can give much more precise doses than we were giving.  Previously, we could only give full-strength insulin in 1/2 dose increments.  Now, we can give it in doses as small as 1/10th of a full-strength dose.  This is perfect for situations where he eats a very carb-ish food, but only eats a third of it.  We can now give a third of a full-strength dose, rather than not dosing at all, or giving a half unit.  This will allow for much better control of blood sugar readings.

So, since we don't give this dilute Novalog through the pen, we are now using syringes, which feels very old-fashioned to me, but it's ok.

With the dilute insulin comes a completely different correction chart for dosages.  Our old chart went in increments of 1/2 units for every 50 mg/dl of blood sugar.  This new chart goes in increments of 1/2 units for every 10 mg/dl of blood sugar.  I'll never have this one memorized, so I'm making several copies of it!  Also, we are supposed to cover his blood sugar and snacks between meals now, where we weren't doing that before.  This does mean more sugar checks, but he handles them awesome, and they really don't hurt. The between-meal dosage is different from the meal time dosage, as we give him 1/2 doses between meals. 

Carb coverage at meals before was 1 unit of insulin to every 15 grams of carbs he ate.  Now, at meals AND snacks, we dose 1 unit of (dilute) insulin for every 8 grams of carbs he eats.  So, that's different also.

Another new thing that happened this week is that, while we were at the doctor's office, the nurse helped me insert a port into Jameson's fatty tissue.  This time, it is inserted into his butt.  But we are able to insert it anywhere we were giving injections before - where there is fatty tissue.  I was very nervous to insert the port, as the needle is huge (compared to an insulin needle).  We put a numbing cream, called Emla, on his skin and let it sit for about 45 minutes.  Once you take off whatever was holding the cream on and wipe the skin, the area that had the numbing cream turns white, and you can see just where to insert the port.

It goes in similarly to an iv needle, except that I don't have to locate a vein.  It just has to go into fatty tissue, so it's not difficult at all.  (Just scary the first time!) The needle has a thin, hollow plastic tube around it.  The plastic tube and needle go in all as one motion, then you remove the needle, and the plastic tube is left in the skin, so it's nice and flexible, and moves with the body, all while the insulin gets delivered through the tube.  Then, when it's dose time, you just inject the insulin into the opening at the top of the tube, and Jameson doesn't have to get a skin poke each time he needs his insulin.  Pretty nifty!  The ports have to be changed every three days.  He cried a bit when we put it in, but it was short lived, and I think he'll much prefer not having to get 5 shots a day, but rather one poke every three days.

Dr. Edelen told us that, for whatever reason, if the liver is going to kick out glucose, it does it between the hours of 1 and 4 am, and it's important to watch the glucose readings during that time.  So, that means that I basically don't get to sleep through the night again until Jameson's old enough - and responsible enough - to check himself in the middle of the night.  I was doing 2 am checks right after diagnosis, but things seemed ok, so I kind of stopped doing them.  Now, with all the dosage changes and the plethora of new information I have, I have to do them nightly again.  I'm hoping Matt will help me once in a while. 

Once our insurance kicks in (March 1), we are going to look into getting him on the pump.  The doctor was very much on board with him being on one.  She feels it gives wonderful control over T1D, especially in very young patients.  So that's uber-exciting news.  We just have to find out how our new insurance will handle the disease.  Will they consider it a pre-existing condition, and not cover the $5k-$6k cost of a new pump?  If that's the case, we may have to get cobra (which I believe is retro-active to Matt's last day with his old job), and prove that we never took Jamers off the insurance, and then *maybe* the new insurance won't consider it a pre-existing condition.  And maybe they won't at all, since it's T1D and he's so young.  Who even knows.  Something we have to look into, obviously.

Is your head swimming?  Lucky for you, you can forget everything you read and carry on with life :) Despite my overwhelmed feelings, I'm armed with a lot of good information, and feel like we are moving in the right direction.  I just want my sweet boy to be happy and healthy, and he will be, I'm sure.

I'll leave you with my one main thought over the last few days: Type 1 Diabetes, you suck.  That's all.

Have a fantastic weekend!!



1 comment:

  1. It is a lot of change, but I believe that you will do well. We had to make some of the same changes as well. Of course now that Kaylan is on the pump she only uses the novalog. I didn't even know they made a diluted insulin.

    That looks like a different type of port that I looked at. The one I tried on was an I-Port

    I don't think you will have any trouble with the insurance and the pre existing condition status, I think this is one of the exceptions. Our insurance considers the pump and supplies as DME (durable medical equipment) so it pays a certain percentage. Kaylan's pump will deliver a 1/4 so it sounds like you can really dial in the correct dose.

    Just remember changes will happen, mistakes will happen (Kaylan drank a regular pop and didn't realize it) even when you do everything right weird things can happen, so hang in there.