The Hannen Family

Okay, so this Diabetes thing has totally infiltrated my way of thinking.  I went up to test Shealyn the other night.. as always.  When I put my hand on her hip to roll her over a bit so I could access her pump pouch, her PJ pants felt damp.  “Oh crap!  She must have had an accident.  Eek!  She’s probably high!”  I feel a bit more…. nope, false alarm! Wait, she feels sweaty instead.  “Oh crap!  She sweats a lot when dropping.  She must be low!”  I quickly tested her to find her BG at an ideal 162 (target is 140).  “Oh crap! I just took two weeks off my lifespan from worry in two opposite extremes in a thirty second timespan and she’s just warm from her blanket.”

Ugh…

Okay, so it’s a sad day when one gets this excited over a little medical wipe.  Lol!  Shealyn had skin reactions to 4 (count ‘em- 1, 2, 3, 4) previous adhesive removers.  We change her pump infusion site every two days and there is always a circle an inch wide of residual adhesive left on her hip/bottom.  I’ve tried other home remedies such as baby oil suggested by other parents of T1 children.

The only thing we’ve found to work was something called TacAway that they had sent us home with 3 samples when she first started her pump in April.  Since then, I had a heck of a time finding it in stock anywhere and had tried other types.  Welcome EdgePark Supply!!  The lady laughed when I celebrated the fact that they 1) had it in stock and 2) would ship to an individual.  I will be simply wiping away about 20 circles on our girl’s bottom as soon as she finishes breakfast.  Ahh .. the ‘little’ things in life.  Lol

It’s nice to write a post about Shealyn that does NOT revolve around her Diabetes… =)

She was climbing on Daddy this afternoon as he was laying on the couch. She suddenly went headfirst over his legs and basically landed on her head and hands on the floor. It was as if it happened in slow motion. She caught herself so we knew she wasn’t hurt. We both just bit our lips to see what her reaction would be. Typically, she gets embarrassed and starts to cry for the blow to her pride.

She calmly said “I tried to balance” and Louie and I just lost it. Yeah, you sure did try honey. She then fussed at us, for “it wasn’t funny!” and then promptly hid in the hall coat closet.

Shealyn went for an appt with her Endo on Friday. The appt. itself was an absolute disaster as she suddenly needed a pump site change and spiked to over 450 BG. Considering she shouldn’t really even cross 200, that was bad territory for her. I knew something was wrong when she was throwing down screaming on the floor of the lab because the tech simply wanted to take her blood pressure. Lol…. NOT typical behavior for Shealyn. Give me a finger please.. time for a test! =) After holding her down and fighting with a little body that suddenly seemed to have at least 8 limbs, I got a new site in and an insulin correction quickly brought her back to normal and her happy little self. She couldn’t understand why everyone kept checking on her and asking if things were alright. Poor kid didn’t even know she had lost control…

The GOOD part is that her A1C level results came back today. I was quite impressed to get a call from the Endo on a Sunday evening! A1C basically gives you the average blood glucose reading from the past 3 months. At diagnosis in February, she was a 10.0… not good! Now, she is a 7.7 and he was quite impressed with it. Yahooooooo!! That is a great level for someone her age and especially good for someone so soon after diagnosis.

A big pat on the back to Louie and I if I may do so! Lol We have been very careful with carb counting, weighing her food, giving correction boluses, watching activity level, etc. It’s nice to see something concrete to show our work has been worth it! An A1C near 7 shows good control and means less likely to have other physical complications that Diabetes can lead to.

Shealyn has adjusted very well to wearing her insulin pump and her glucose readings have been pretty stable. We got two fabric belt pouches for her to wear. It makes it much easier than sliding it into her pocket… especially since most of her clothing doesn’t even HAVE pockets. Lol… This way, the pump stays in her pouch at her waist and doesn’t get in the way as she potties or gets dressed. She reminds me of a little sumo wrestler though when she runs away stark naked with only a belt around her waist. Lol…

We now go 3 days btw infusion site changes and it seems to be working at the moment. We may have to go back to two days when the summer heat starts, but I’ll stick with 3 as long as it’s working. She shows off her pump to anyone who will listen and goes through her explanation of, “This is my pump and it gives me medicininin in here (points to tubing). It goes down here and right into my BUTT!” Heh.. for some reason she thinks it’s hilarious that it’s attached to her hip/bottom. Back in the days of her insulin shots, she wouldn’t let us go anywhere near that area.

Woohoo! I’ve changed an infusion set!

Today was Shealyn’s first change after the one at the hospital. Since Kaycee had done the initial one she stood by for support as I did everything. Other than a little initial confusion about priming the set, it went perfectly!

I would think that having a needle push a tiny tube into the right side of her butt would be the worst part. NOOOO… that’s nothing to Shealyn. The only thing she hates is being held still while daddy carefully does what he’s read so much about for the first time. She didn’t even notice the poke (thank you, modern needles).

I’ll take doing this every two days ANY TIME over the injections. Not to mention there’s a world of difference between the two control-wise. Shealyn’s numbers right now are so much better than we could have ever gotten before.

Louie posted the other day about receiving Shealyn’s pump. We spent the weekend pouring over the 222 page manual that comes with it. Yes, 222 full-sized 8.5×11 pages…. and that IS all the English parts. None of that foreign language filler in there…

I had an appt with her CDE at Duke yesterday and I was expecting to have Shealyn put on a Saline Trial. Most offices require you to do a week or so as a practice run on the pump before going ‘live’ with insulin. After seeing that I had already programmed most of the pump and customized the settings, her CDE (Jean) commented on how we were so prepared. After hearing the few questions and concepts Louie and I had discussed, Jean threw the saline aside and let us go live. YAHOOOOOOOOO!! She said I was one of the most prepared, educated, and confident parents she has dealt with in a long time. Apparently, some families arrive and haven’t even opened their box yet! I just can’t imagine that!! Your child’s LIFE depends on the proper use and understanding of this pump. How can you NOT do your homework?! It’s just a concept Louie and I don’t get… Lol….

After I placed her infusion set and hooked her up, I panicked and remembered she still had Lantus (24 hr baseline insulin) in her system from the previous night. Jean calmly said that was the next step and showed me how to program the pump to delay infusing any basal units until 8 p.m. when the current Lantus would be gone. I called Louie a few minutes later to share the good news about how Shealyn had handled the infusion placement well AND we were on insulin already. What was his immediate response? “What about the Lantus from last night??” I laughed and shared with Jean, who just shook her head chuckling and muttered again about how she wasn’t going to worry about us at all.

We had a little slumber party last night and Shealyn slept on a mattress on the floor of our room. I had to flip her over a few times to get her off the pump and checked her glucose about every 2 hours or so. We wanted her close in case there was a blockage or some other reason for an alert. I’m not sure we would hear it over the monitor or not, so Louie and I were both more comfortable with having her near. Her overnight numbers were the best they have been since she was diagnosed almost two months ago. We have already seen great improvement in the control and are looking forward to fine tuning it even more over the next month or so. She seems to have adapted well and we’re off to a great start! I’ll post a photo of her proudly wearing her pump soon.

It’s going to completely change how well we can manage Shealyn’s blood glucose levels.
It comes with in-home or at-work personal training for family members, teachers, and other care givers.
It costs as much as five 32″ LCD HDTVs OR two top-of-the-line stainless steel professional quality refrigerators OR a nice used car. (Thank God for insurance.)
It fits in the palm of my hand…

(click for larger picture)

It’s Shealyn’s insulin pump!

After having representatives from two companies come to our home and give us demonstrations, we decided on the CozMore System from Smiths Medical on Monday, and received a pump and supplies on Friday. How’s that for quick?

Almost all pumps do the same things, and there are very few differences between them. Among the differences between this pump and others, we like the fact that this one comes with a glucometer which attaches to the back of it and inputs measurements via an infrared connection between it and the unit (the same infrared connection that we’d use to communicate between the pump and a home computer). There’s one less chance of making a mistake. When we do a blood test, results are automatically beamed to the pump.

You guys heard right about training! A major part of our decision to get a pump was to make things easier on family and other caregivers. You’ll still need to know how to draw insulin and give injections in case of an emergency, but the pump means that - under normal circumstances - Shealyn will be receiving a base rate of insulin automatically and you’ll have an easy way to very accurately give her what she needs for meals. Smiths Medical will send a person to you so you can receive training and gain confidence in using the system.

I’ll cut this short since Kaycee has told me she’s following up with a more detailed overview of what we’ve received. We’re VERY EXCITED though! This is going to be a wonderful tool for keeping Shealyn’s diabetes under control!

We have always been amused by how much you can see and hear Shealyn’s thought pattern while she speaks. It’s not as if she is stuttering, but she decides what she wants to say while in mid-sentence and just fumbles around until she lines up all her thoughts. Then she suddenly just spits it out clear as day.

Last night was the most amusing example of it since she first started speaking…
Background info- A friend of ours, Cynthia, threw a baby shower for us this past weekend. The four of us were at the dinner table last night and Louie and I were talking about how nice it had all gone. I then shared an amusing story with Louie that Cynthia had told me about. Shealyn tried to get in on the conversation….

“Ummm Mama? What did- What did cyn- (pause…..) What did cyndi- Ummm did Cynthi- (another pause…) What did Cynthia- WHAT did Cynthia- (yet another pause…) Ummm- WHO is Cynthia!?”

Louie and I just erupted in laughter! She was struggling and struggling over how to say her name and ask what is was Cynthia had done. However, then she must have realized that she didn’t even know who Cynthia was so the point of communication was altered. It was not how we were expecting the sentence to end. Shealyn burst out with a “It’s NOT funny!!” of course. It didn’t have the desired effect though as it simply made us laugh harder.

Louie and I finally made a decision as to which insulin pump to get for Shealyn. We were bombarded with new terms and features as we researched the different models available. It is a whole new world for us. We have decided on the Cozmore system made by Deltec. The final straws were the fact that it has an attached glucose meter and the menu is much simpler… fewer steps to go through to get the desired action.

We made our decision this weekend.
I called the pump rep and Jean (our CDE - certified Diabetes educator) Monday morning to let them know our choice.
The pump rep called back late Monday morning to say all necessary forms had been filed already.
Then I get a call this morning from Deltec saying insurance has already approved it and the pump is shipping today.
It will be in our hands on Friday. Talk about service! I was expecting a drawn out process of faxes and hassles with insurance.

Now we just wait to find out when we can get into the clinic for the ‘pump start’ appts. I don’t know what kind of timeline to expect, but we’re hoping to have Shealyn on the pump for at least a few weeks before her baby brother arrives.