Monday, August 30, 2010

I don't even have the words to title this.

I am not even sure where to begin.  I have so much I need to get off my chest but I don’t even know if it will make sense, or come off like a huge run on sentence of emotions.

Let’s start from the beginning (sorta) as I mentioned before Justice needed his basal’s higher because he was spiking through the night, and no matter how many corrections would not come down. We adjusted and he was doing great! A few minor snags but that’s what diabetes is.

Friday, I noticed that all his sugars were the 80-100 range. Now while I know this is great, I also knew this was not normal for him. He had just needed so much more basal, at times, less at the other times and it was working. Why all of a sudden was he running on this lower end? Hmm OK, maybe he’s just more active. For lunch he was at 85 had McDonald's, and an hour later 80, then 86, then 95. It was like he never ate! Hmm OK. Making mommy notes.  Mind you he was playing the wii, so had at least 6 gummy bears during all this. But he never went about 100. More mommy notes.

Bedtime came around and he was at 110. Great sugar but a little too low for bedtime.  We gave him 6gc (ice cream) and sent him to bed.  My husband was going to the store to get some frozen yogurt, and said “honey, go to sleep. Ill recheck him as soon as I get back”.  This would have been only an hour since ice cream so normally that would have been fine. He wasn’t low, he was at 110 and had ice cream right? Well something told me GET UP NOW. So I did. As I touched his hand to check his sugar, I got this awful feeling in the pit of of my stomach. I knew he was low. 5….4….3….2….1….44! Just as it read 44, he jolted up and said “What is it!?!”. I told him and his eyes just widened. We got out of bed, walked to the kitchen and he downed 6 oz of milk and a PB cracker. 30 minutes later and  74 was the highest we got him too. Dh was home with the frozen yogurt, so I put on Hannah Montana and let him dig in. Any other mother or 2 years ago I would have treasured the moment of watching TV and eating junk food late at night in bed, but not now. This was not good.

Finally he came up to 135. OK. Good! Off to bed, and rechecking in 30 minutes. I fell asleep and hubby was on duty. In the middle of my sleep I hear “what!?”. Sugar was 85. How did he drop again? So hubby made the decision to lower his basal and leave it for an hour or two.  Good idea! He hit 140 and stayed there till his next check at 3am, and 6:45 was around the same.  We thought OK Saturday was a busy day, with the JDRF kick off rally, then park, then McDonalds playplace.

I had been pooped from the night before, so after I woke up and gave the kids breakfast, I went and took a nap and daddy was on duty. I hear from the kitchen “Dad its 48.” I bolted out of bed. This was 2 hours post breakfast, with a 70% temp basal, what the fuck was going on?!” I cant even recall every moment after this, except that I know these low 70s continued all day, after lunch, snack etc. I called the endo on her emergency cell (thank god for that thing). She was stumped. She kept asking me are you SURE hes not accidentally bolusing himself?? I knew that wasn’t possible but I double checked pump’s history. NOPE. Is it different insulin? That question confused the shit out of me. Like I had some mutated Novalog?! Nope, same cartridge for 5 days, tonight's cartridge change. OK she said, lower all basals to 50% and ICs to 15. WOW. I haven’t done an IC of 15 in forever! Especially not all the across the boards. Then she said “ If this continues more than two days, cause it could be due to activity, I need to run some labs”. I didn’t even ask what kind, cause I didn’t want to freak out. Of course now I am. I can only think they may want a new C Peptide to see if his Pancreas is secreting insulin? Honeymoon two years into diagnosis? I thought we had lucked out and not had the HM period. So we lowered everything like she said.

Recheck an hour later 166. Yes!! Omg I could cry I was so effin happy.  219. 233. 265. 278. Holy shit now whats going on!? Clearly I had to do a correction, and I upped his basal back to normal. Got him down 170 I was so happy! Was it over?!

Dinner time! Spaghetti, meat sauce, taco shells (he asked for it, and he earned it!), my Nutella cups. This was gonna be a bolus insanity . He ate. We bolused. He went out to play, and felt great. We had company over, so as they were getting ready to leave I decided to check his sugars an hour after dinner. I was expecting anywhere from 200-280 with all those carbs. 48. OMG.

The next few hours went like this. 58, 73, 83, 65, 64, 79, 48, 65, 66.  With every low we gave more sugar. But he just wouldn’t come up. I disconnected him, and changed the cartridge and tubing since It was time. Figured that being off the pump for 15 minutes may do him some good. By the way at this point his basal was at 30% so it was only 0.15 an hour! Nothing was working.  He got up to get some water and a gluco drink, we walked to the kitchen. He looked at dad, and just broke down. He ran into his arms and sobbed.  I saw this from the kitchen where I had to bite my lip, turn around and wipe my tears. Synsyre came storming in trying to get in the middle of them. Hubby told him, stop go away. His heart broke. I grabbed him and hugged him and explained Justice was having a hard time, Daddy wasn’t mad mad at him, he just needed to give them a minute.

Justice got up wiped his tears, and I told them they can go lay in my bed and watch TV I would be right in. I grabbed extra meter, ketone meter (just in case), tabs, and juice. I was ready. I looked over and saw my husband in tears. His face was all red, his lips were pursed, he was fidgeting and tears were slowly coming down his cheek. I ran over to him and hugged him. We both cried. I knew Justice would be back to see what was going on so we wiped our faces. He told me Justice had said how he felt so bad, and scared. He hated feeling like this.

I went back in the room, sugar check. 85 (I am trying to remember all of them now, I don’t have log with me at work.) I then decided after talking to Sarah (@Sugabetic) earlier to switch to the back up pump. Accu Chek provides a backup pump that has a life of 180 days. It’s in case of any mishaps etc. So we switched to it. Could it be a pump thing? I had no idea, but at this point I wanted to try anything and everything.

Sugar check.  132. Yes!! Next check 166! Yes!! I put basal back to 50%.  30% was too low now but I didn’t want to go to high.  I knew he may spike uncontrollably but I didn’t care I just needed those lows to go away!!  He got into bed, we had agreed he wouldn’t start school today as we needed to figure out what was going on.

It happened. He spiked to 270 and after 3 small corrections would not come down. No ketones. I then upped the basal to 70%. Still nothing no movement. Put basal to 90% and did another small correction. (Our pump comes with a bolus calculator so it calculates correction based on last correction and IOB). Finally he hit 193, then 189, and woke up at 170. I had never been so happy to see  that number!

We decided to leave the basal at 90% since that was working well, but to keep the ICs at 15. Breakfast was had and he spiked as he should an hour later! No drop. So far so good.

I am not sure right now if the pump malfunctioned and was giving too much insulin or if it was a fluke. When I get home I will be looking into the pumps history and trying to see what happened. I don’t know how much it matters at this point, but I need to know what’s going on. I can tell you now if it was a pump error, holy shit its about to go down!

Last night was one of the worst nights since diagnosis. He has never had lows all day. His poor body was so tired and he had dark circles under his eyes. I was distraught after seeing him and daddy hold each other and cry. My heart ached, I couldn’t make it better. I am mommy. It’s my job to make it better, but I just can’t.

Another thing stuck with me. I went to bolus him this morning and he said “Mom, why do I have the back up pump?”  “We switched it last night remember silly?”.   We had changed it together. Me, him and Synsyre. They were playing with it, and everything. “No mom, I don’t”. He was totally serious. He had had the short term memory loss from a low that I’ve only heard about. I wanted to cry. But I couldn’t. I had to stay strong for him. “Its OK bud, you had a rough night, and you’re tired. Today you can relax, and it will be a better day, I promise.”  “Ok, mommy. I love you”.

“I  love you too baby”. I wanted to grab him, and cry. Tell him how this disease was total bullshit, and I am so sorry I can’t take it away. I wanted to wrap him in a protective bubble, to keep him safe and promise him he will never feel this way again. But I can’t. There’s no cure. No way for me to guarantee that. Even when you do everything right, it doesn’t always matter. There is no consistency with diabetes. No pattern to follow.

I hate diabetes. I hate that my 7 year old son aches like this. I hate how it affects his baby brother. I hate that he had to miss the first day of second grade, due its roller coaster.
But honestly more than anything I hate that I can’t take it away. Why him and not me?  

I do believe we are chosen by god for these things. I was meant to be a D mama. But why was he meant to have it? I don’t normally question things, but after yesterday I really wish there was an answer.
All I can do is be strong, diligent, and keep on doing what I am doing. My husband and I. There’s no other way.

I do hope though, everyday, every moment, that we will find a cure for this thing.


sisiay said...

wow. every time i read about something like this from a parent's point of view i'm just left in total awe of what you do. it's hard enough to do this stuff for yourself, but WAY harder to do it for someone else. he's a lucky guy!

Reyna said...

(((HUGS))) I have been there and I feel your angst to the core of my being. Hang in there Alexis.

Renata said...

Unfortunately, that won't be the last time you go through that or this. It could be anything, him growing, his body fighting being sick, or his body just trying to show you whose boss. We had the same thing yesterday, both kids dropped like a rock at different times and they ate like they hadn't ate in a long time trying to get them back up. Saying that it's frustrating doesn't even begin to explain. Since we have been through this a few times I usually handle it pretty well, but yesterday just brought me to tears. We feel you. Your family will work through it. Take notes, they may help next time you never know.

sugabetic said...

Way to go, chicka. Ya made me cry again!

I know this is a serious disease, I live it each and every day. It is hard. It is bs.

But I will say this.. You said, (and I quote) "I am mommy. It’s my job to make it better, but I just can’t." But the thing is, girlie, you do. You and him are a team. Fighting this together. Crying about it together. You DO make diabetes better for him because he has YOU!!! You know this from be better than anything you know about me that being there for your D-kid means more than anything to them. You may not be able to heal him physically, but being there emotionally for him means the world to him.

Keep up what you're doing - and that's being a kick-ass d-mama!!!!

Alexis-Nicole said...
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TuDiabetes Administrator said...
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Lorraine of "This is Caleb..." said...

Let's see if I can get my 2nd attempt through:

This weekend at mass the priest called the kids up and explained that they should be happy with who they are and not want to be like others. That God made them who they are and that they were each perfect.

The first thing that went through my mind was diabetes. Diabetes? Perfect? Hm.

That night while changing Caleb's Pod he did what he often does as this is perhaps the only thing he really dislikes about diabetes - the insertions. He said, "I wish I didn't have diabetes". I reminded him about what Father Jeff said and we tried to come up with something good about diabetes. We were mostly blank, but he decided upon "to make new friends".

This is a blog post in and of itself isn't it? Well the point is, well what is the freakin' point? I guess THAT's the point.

On another note - I sure am interested to hear what the blood work would be for. If Caleb had that done every time we went through insulin changes, he might be getting his blood drawn every other week!

Meri said...

I have heard of this happening to a friend. And the memory lose to another. Why? Why? Why? Freaking Why? I am so sorry you had such a rough couple days...I hope this craziness is over so justice can feel safe and not have to fear the countdown on his meter. ((HUGS)) to you new friend!

Heidi / D-Tales said...

Whew, you've sure been through the ringer, eh?!

The memory loss always upsets me more than the numbers.

Here's to better numbers soon! And, as you said, keep doing what you're doing! You and your husband sound like wonderful parents!

Alexis-Nicole said...
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