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…

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.

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!

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.

Most visiting here will have already at least heard the short version of Shealyn’s diagnosis. I’m going to type out the long version here just to get it off my mind. *chuckle* I know some were interested in details so this will be the central place to send you to so I don’t have to keep reliving it in the meantime.

We (including Papa) noticed that Shealyn’s thirst had recently increased. However, she had gone on jags before where she varied the amount of food and drink she consumed so we didn’t think much of it. Excessive urination soon followed and things got interesting. She is currently potty training and would get upset because she would have an accident just ten minutes after going potty. That’s just not right! However, it still just really fit in with the fact that she WAS consuming more liquids than normal and we let it go. On Thursday, 2/8, she got more and more upset if you tried to distract her away from having more to drink. She didn’t care if it was juice, milk, or water. She just HAD to have something to drink. She isn’t usually that sensitive with something like that. She then woke up at least four times in the night with bad foot and leg cramps. I pulled back her comforter when she screamed there was something on her foot and found her foot literally bent in half. That’s when my stomach dropped. I knew muscle cramping could be from dehydration, but how could she have that when she going more, not less, than often??

I called the Pediatrician as soon as the office opened the next morning and got an appt. for 10:00. I left Louie a message to let him know I got in and headed off to pick up Papa so he could watch Vee for me while at the Ped. office. I could tell the nurse and Dr. took my concern seriously, but of course they assumed there was a simple explanation like some type of infection. I can still picture Dr. Bell’s face when he got the results back from the urine test. He just slowly shook his head and said he had to immediately send us downstairs to the lab for a blood panel because her Ketones and Glucose were much more elevated than normal. I totally knew at that point… it was going to be confirmed Diabetes. I just felt it in my gut.

I left Louie another message saying it wasn’t looking good and impatiently waited our turn for the blood draw. I started planning ahead and decided to call Ginger (my MIL) to let her know this was a possibility and we may need her help soon. After holding Shealyn in a full body-lock with the help of another nurse, we finally got the blood drawn that they needed. Shealyn actually had one of the nurses in tears because she was _pleading_ “Please stop” and “Please don’t” the entire time. We then headed back upstairs to wait for the results. It seemed like an eternity, but was probably only about 20 minutes.

I suddenly understood that she could be in current danger when I overheard Dr. Bell in the hall telling the nurse, “I don’t care if they are backed up! I may need to get this girl to the hospital immediately. I need the results NOW!” I looked at Shealyn, happily reading a book and talking away, and my heart just broke. She had no idea that her life was about to change dramatically. Life was now going to be different for everyone in the family and those differences were going to last a lifetime. Dr. Bell soon returned and said that her glucose was too high to even measure accurately at their lab. That meant it was over 600 (and normal is about 150 apparently). I calmly said, “Is there another possible cause for this or are you telling me that I’m now the parent of a diabetic?” His reply was simply a comforting hand on my shoulder and “You are the parent of a diabetic”. He then said she was not in immediate danger of Ketoacidosis (body burning fat for energy and can easily land one in ICU) though, but she would have to be admitted for monitoring and glucose regulation for a while.

I called Louie, fighting back tears for Shealyn’s sake, and barely managed to squeak out the words to say he needed to come home. I called Ginger again and got her on her way. I wanted someone to take Vee in the meantime and be home in a few hours to meet Kaitrinn when she returned from school. I didn’t know if Papa (my father, Jack, who has been an insulin-dependent diabetic for 50 yrs) would want to join us at the hospital or not, so I needed a backup plan. I brought him back from the waiting room and we waited while Dr. Bell struggled to find us a hospital bed. By the time we we got a Dr.’s name and hospital location, the entire family was waiting at home for us. I called my mom in WI on the way home and dropped the total bombshell on her as well to let her know what was going on. I walked in our house to find Stan, Amy, James, and Ginger there while Louie was packing our suitcase.

We were to let her eat some lunch and then get on our way to Duke Children’s hospital in Durham. We all just stood in the kitchen and I felt like it was a dream. A short 24 hours earlier, none of this had been imaginable and now it was our new reality.

-Kaycee

Papa and I took Shealyn and Vee to a friend’s birthday party at Chuck E. Cheese’s today. I have now officially had my first ‘battle’ as the parent of a diabetic and it took less than a week. *laugh* The server appeared at the table with a stack of cups and two pitchers of Sprite. I put my arm in front of Shealyn and simply explained, “She can’t have Sprite. I will take care of her.” She looked at me, nodded, and then promptly picked up Shealyn’s cup to fill it with Sprite. Ummm..excuse me? “Miss? No thank you. She can’t have Sprite. I will get something else for her over there.” The server then walked to the other side of the table to continue filling cups. I figured it was over and picked up Shealyn’s cup to go fill it with Diet Coke instead (Let her have the treat of soda like everyone else, but without any carbs). I turn to see the woman get a NEW cup for her, fill it, and place it in front of her. Oh Good Lord now! What part of “She can’t have Sprite” is difficult to understand!?? I had to tell one of my friends to watch and make sure she wasn’t served it while I hustled over to get her something else. It was such a simple thing, yet so ridiculous at the same time. Would the Sprite hurt her? No, but with the amount of carbs that are in it, I definitely need to know if she has consumed it in order to properly measure her insulin.

-Kaycee

It isn’t until you seriously start looking at carbohydrates and portion sizes that you notice it is TOUGH to measure some things even at home! (I won’t even get into going out just yet.)

Take grapes as an example. We have a book on carb counting handy. When you look up grapes you get a couple of main groups: American, and European.

Which one would you pick? If you picked American you’d be wrong in our house. American grapes are slip-skin, which means that you usually slide the thick skin off and eat the inside. European grapes are the green or red variety you commonly find in grocery stores or restaurants around here.

So now you know you have European grapes. How many carbs are in a given portion size? The book says it’s 28 in a cup, or a certain amount by weight. We don’t have a scale yet so the weight measurement is out. The volume measurement seems bad to me because there could be a huge variance in the amount in a cup based on their size or shape. From 20-50 percent of that cup could be nothing but air. What to do?

I went online and found that the ADA says that there are 9 carbs in 10 green or red European grapes. OK… but what size are the grapes? It doesn’t say.

I ended up measuring out “a cup” of grapes and compared the number of grapes in that against the carbs listed on the ADA web site. Things appeared to work out alright. I went with the 9 carbs in 10 grapes formula and kept a count of what Shealyn ate. That was easy! She’ll eat as many grapes as I give her.

We’ve done this work for Jack before so it didn’t come as much of a surprise. However, he usually does all of his own counting and I know he has to fudge it some. Jack has had decades to learn how to do that. We’re amateurs! I think we’ll eventually need a scale to get this right.

- Louie