Finding hope in an email

There are so many things going on in my brain this morning. So much to think about.

The last few days have been very rough as far as diabetes is concerned. Riley had a set change on Sunday, Monday, Tuesday, and early this morning. Sunday, his needle came out while he was using the restroom. It was due to be changed Sunday, so not a big deal. I wanted to change it after he went swimming, but it was OK.

Monday he started out at 121, which was nice. By lunch he was 304. Not good, but these things happen occasionally. He got a correction and a bolus for lunch, but his sugars were still in the 300s (385, 342). I looked at his needle, but didn't really see anything wrong. Later, when I went into the bathroom with him to test his ketones (which were small), I noticed blood in the tube. Michael was working, so we went to my mom's house so she could change the needle. Then, I must have over corrected because he was down to 54 a little while later. Then, 128 and 183. He ate an unusually large amount of food, most of it being carbs. He got the largest bolus he's ever gotten, 2.0. He then spiked up to 315 then 364. A correction brought him down to 272. But, then he went back up to 290, 289, 291. He just wouldn't come down even though we were correcting him. And, this was in the middle of the night when we usually wouldn't correct so much. Eventually, Michael just went ahead and changed the set. He didn't come back down until lunch time and then was 125, 197, 171, 133. OK, now everything was back to normal.

That was until 9:30 that night when he spiked up to 331, he got a correction and 2 hours later was 352. By this point I've had about all I can take and Michael is about to pull his hair out. What in the world is going on? I've increased his nighttime basals already, but it hasn't seemed to make any difference. An hour later, he's 364. How, how, how? I just don't understand. His set looks perfectly fine. But. he's not coming down, again, even with corrections. So, Michael did another set change and another correction. In an hour and a half, he's 190. He woke up at 146 this morning.

I just don't know what's going on. With the exception of the set with blood the other sets have looked perfectly fine when they came out. The insulin is brand new. But, it couldn't be the insulin because his sugars have been fine during the day. It's just the nighttime that his sugars spike up, not just a little, but a lot. I'm going to wait a day or 2 and increase the nighttime basals again. Has it really been the sets or is the honeymoon over? There are so many reasons why his sugar may go up. How do you know which one is the culprit? And, how long must Riley endure these high sugars until I figure it out? I swear if he spikes up again tonight, my head just may explode. I'm just so emotionally drained right now.

It seems that whenever I get the least bit comfortable, just when I think everything is going to be OK, diabetes has a way of slapping me in the face and waking me back up to reality.

As much as I want Riley to have a normal life and as much as I want to fool myself that everything is fine, it's not. It is not fine. It is not normal. It is stressful and draining and a burden that he must bare on his own one day. I try not to think about that often, the future. I just try to live in the present.

But, today, all I can think is one day Riley will be up at 2 AM changing his set in a sleepy fog wondering what in the world he could have done differently. Worrying about what affects these sugars are having on his kidneys and his eyes. And, knowing there's really not a darn thing he can do, but take what life has dealt him and go on.

I am crying so hard now I can barely see the keyboard. I haven't cried about diabetes in a while. It's just so hard. It's just so damn unfair. I know things could be so much worse. But, sometimes I just can't help but think why did this happen to my baby. Why? Why? Why? But, no matter how many times I scream it, there is never an answer.

When I started this post I had some hope. I was actually a little excited. I had just received a response to an email I sent last week. I now have a location for my Lee Iacocca walk. Now, I can start planning. Now, I can ask others to join the team.

Now...I can hope again. I can look to the future and see, not complications, but a cure. A cure for my baby and all the others who live with this disease every day.

My Opinion

Because I said I would let you know my feelings about the whole "should people with D have kids" debate, here it is.

When I first clicked on the link (debating the issue) I got angrier and angrier with each comment I read. Then, a few hours later I calmed down enough to think rationally.

First, I felt sorry for the person who said that they would have rather not been born than to have diabetes. It's just my opinion, but from reading their comments, they probably would have felt that way about themselves even without D.

Then, I realized I wasn't upset because someone may decide not to have child because they are afraid to pass diabetes onto them. That's a personal decision for them to make. I realized what upset me so much is that people were telling other PWDs what they should and shouldn't do. How dare they say my child shouldn't have children. It's really none of their business whether he has children or not. That's Riley's decision to make with his future spouse.

I made the decision not to have any more children the day that Riley was diagnosed. I came to this decision because I didn't want to take the risk of having another child with D. I didn't make this decision because I think that there are enough people with D in the world. I made the decision because I couldn't imagine taking care of another child with D. So, my reason was purely selfish.

But, if I knew before I got pregnant that Riley would get D, I still wouldn't have changed a thing. I can't imagine my life without him, diabetes and all.

And, just because I don't want to risk having any more children with D doesn't mean I think other mothers shouldn't do it. Like I said before, it's a personal decision.

So, to those of you out there who feel like people with D shouldn't have children, just worry about your own life and leave them alone. I'll say pass a law to prohibit people with D from having kids as soon as one is passed saying ignorant people can't procreate either.

What's your opinion?

Today I was reading this, which I found on a link on Kassie's blog. I had read Kassie's post a couple of days ago already, but this post by Tiffany got me to revisit it again.

The first time I read Kassie's post, I didn't click on the link because,well, I was trying to avoid getting upset.

I have tried to avoid controversial posts since this one that I wrote in January. I received a couple of not so nice emails because of my views on the subject. But, I just can't let this subject go by without saying something.

But, for now, I'll refrain from telling you what I think and listen to what you think. Should people with Type 1 D have children of their own, knowing that they could pass on the genes to their children?

If you've read my posts before you probably know how I feel about this, but then again maybe some of my thoughts may surprise you.

(Side note to Sassy. If you are reading this, thank you for mentioning me in one of your posts. I couldn't figure out how to email you, so I'll just thank you here.)

A ( not so gentle) reminder

Holden has had allstar games this week. Yesterday was a marathon day. We arrived at the ballpark at 12:45 PM. Holden's game started at 2 PM. They won that game so we had to wait around for another one, that didn't begin until 5-5:30.

During all this time, Riley played in the dirt. He ran around kicking a soccer ball. He played in some water. Because of all the running around, when another little boy came up with a sucker and Riley wanted one, he was able to have not only one, but two throughout the day. His sugars were great.

He ate a hot dog at the game. When the game ended at 7:30, we went to a restaurant to eat. Riley had already had one supper, but he ate again. Actually, he ate a lot. This supper included a cupcake and a few M & M s (M & M s were given prior to the meal due to a sugar of 65). Still, one hour after supper (even though you're told not to test that soon after a meal), he was 228. Not bad at all.

We finally got home around 9:30 PM. It was time for his usual bedtime snack time. His sugar was 138. Too low for bedtime. Also, he had 0.20 units of insulin on board from supper. So, he got an uncovered snack, like he does most nights.

After Riley had gone to sleep, I commented to Michael about how great Riley's sugars had been. I should have just kept my big mouth shut. I told him how it was so nice that he could have the suckers, cupcake, and M & M s like a normal 4 year old. And, by "normal", I don't mean Riley is "abnormal", but if you have a child with D you know what I mean.

I read it on other blogs and I've said it myself: "People with Type 1 D can eat whatever anyone else can, they just have to cover it with insulin". While this sounds great in theory, it's not entirely true. Yes, they can eat what everyone else eats, but no matter how hard you try and how vigilant you are about giving what you think is the right amount of insulin, their sugars are going to be affected. You may get it just right some times, but there will be times where that cupcake or yeast roll just totally screw up the sugar.

Anyway, I felt good about his D and the day. When we finally went to bed around 11:30, a quick sugar checked revealed a sugar of 294. Not great, but I knew the snack would shoot it up a bit and also took into account all the extra activity during the day that was sure to drop his sugar during the night.

To be on the safe side, Michael got up an hour and a half later to check again. This time his sugar was 434!! I quickly started going through all the reasons this could be. He could have gone low and rebounded, that bite of Mac 'N Cheese he ate could be kicking in, or, of course, he could have a bad set. A check on his set revealed it was still in and there wasn't any blood in the tubing or anything else that would reveal that there was anything wrong with the set. He got a correction, but not as much as the pump suggested. We tend to be conservative with his corrections in the middle of the night, because a lot of times he'll drop very quickly and way too much. An hour later, he's 428. Hmmm, not much difference, but we really didn't give him a lot of insulin.

I made Riley crawl out of bed at 2 in the morning, so I could get him to go to the bathroom so I could check his ketones. They were OK so far, so I gave another correction. But, the next check (393) didn't indicate that any of this was working. So, out came the old set and in went a new one. We corrected again. We were conservative again because we have no idea if he received any of the previous corrections and if he did, how much he actually received. He was 292 at his next check. Then, 138. So, mystery solved, it was the set.

The times for sugar checks were 1:03 AM, 2:09 AM, 3:21 AM, 4:24 AM, 5:52 AM, and 8:01 AM. Since I am still doing everything with one hand all of the nighttime checks have become Michael's responsibility. I can check a sugar with one hand , but only when Riley is cooperating. At night, he'll sometimes close his hand or roll over and I have no way of stopping him. I have also not changed a set since my surgery. Even though I woke up with each sugar check and helped hold Riley for the set change, most of it fell on Michael. He got up basically every hour and then spent about 30 minutes doing a set change. Then, he got up and went to work in the sweltering heat all day. I can only imagine how he's feels right now.

So, that "normal" feeling quickly went out the window. I was not- so- gently reminded that my son has a chronic disease and no matter how hard I try to pretend that he's just like very other 4 year old, the fact remains that he can't be carefree about what he eats..ever.

This is one reason I'm trying to organize a local walk to raise money for The Lee Iacocca Foundation. I can't just sit back and let this disease win. I want to be able to look Riley in the eyes and tell him, I've done everything I can to get rid of this disease.

Updates

Just some quick updates since I'm still typing with one hand.

Riley had an endo appointment on June 30th. His A1C was 7.8 (whoo hoo!!). This is down from 8.1 and is a very good A1C for his age. He had lost 1/2 pound since his last visit. The endo wasn't too concerned, since he's on track to gain his 5 pounds a year that most kids his age gain. He has to have some labs drawn. We haven't done them yet because they have to be fasting. Everytime we make arrangements to go he ends up going low at night, so he has to eat, therefore he's no longer fasting. We'll get them done. She's checking his lipids, his thyroid, and the dreaded celiac disease. Dr. M doesn't think he has any problems with any of these. She's just doing it for screening purposes. Even so, I'm nervous about getting the results. Celiac is something that I've had in the back of my mind since Riley's diagnosis. I cried the other day when I read that Danielle had been diagnosed with it. These kids have enough restrictions without Celiacs thrown in too.

I had my follow up with the Dr. on Monday. My wrist is healing, but is still in a splint for another 2 weeks. So, I still can't use my left arm for a while. They took my other splint off and my hand is frozen in an awful position. When I'm finally out of my splint, I'll need 4-8 weeks of physical therapy. But, the Dr. assures me I'll be able to go back to work while doing therapy. I'm starting to run out of time off from my job. The pain is still getting better every day. I hurt a lot Monday and yesterday because the new splint kind of put my arm in a different position, but it's doing better this morning.

My mom took me to my appointment Monday and Riley and Holden went too. We had been there (an hour away) all day because Holden had a Dr's appointment that morning and my appointment wasn't until 3:00. I went into the room with the Dr. and everything seemed fine. But, when I came back out into the waiting room, I took one look at Riley and I knew something was wrong. He looked like he felt horrible. We went and bought a thermometer. His temp. was 103. He was complaining of a sore throat. His pediatrician is in the same city, so we headed there. They did a strep test which thankfully was negative. We were told he had a virus and to give him Ibuprofen or Tylenol and keep him well hydrated.

This is Riley's first illness since D. And I think it's about over. He's been temperature free for 12 hours now and his sugars are looking like they are back to normal. Because of his virus, he's been running in the 300s at times. We've been testing and correcting every 2 hours. We decided to try it that way instead of increasing the basals. Now, I need to clear all the ketones out of his system. He did well with them up until last night. They were moderate. It's hard to make a 4 year old drink when he doesn't want to, but Riley's done pretty well with it all.

This bought with illness brings back memories of his last one. It was almost exactly a year ago. I know this because it happened during one of Holden's allstar games. He spiked a temp up to 103 all of a sudden. Holden's allstar games begin again today. I have vivid memories of his last illness because it happened 3 months prior to his diagnosis. I've always suspected that it was the virus that did in his beta cells.

Now, if only this virus would fix them again. If only...

still here

just a very short post to let everyone know that i'm still alive and well. i had surgery on the 26th and this is the first time i've felt well enough to sit at the computer.
i had torn the cartilage in my wrist and that had to be repaired. but, when the dr. got in my tendon was messed up too and he had to repair that. he also had to cut a piece of bone out of my ulna. very much more painful than what i anticipated. my hand and left arm arm in a huge splint that i can't take off. my fingers are very swollen, and i can't even begin to straighten them without having immense pain. i can only imagine the physical therapy i will have to take when this is all over. but, today is the first day that i haven't been popping pain pills on a regular basis. i go back to the dr. on july 10th.

just wanted to let everyone know how things went. i'm going to try to get michael to type a real post for me sometime. this typing with just one hand is not working very well.