Sleep Deprivation, Low Sugar, Migraines and more

It was after 4a.m. before Keeg's sugar started coming back up. I'm exhausted. With my own health issues, sleep is so very important to keep me from flaring. Yet, sleep didn't exist but for a few hours.

Keeg has a migraine today. His sugar is still running in the 80s, even after food. He is also exhausted. Although he slept, it doesn't appear he was rested from it.

I know that in time all this will get easier, but right now it is HARD.

My heart aches for Keeg. He is trying so hard to put on a brave front and smiling face. Yet, he is consumed with one thing only, trying to eat.

I have a thousand wishes, and all of them revolve around my children and I being healthy. That's what I wish we could have.

I'm having a hard time finding the beauty today.

Low Sugar

I haven't updated simply because I can't find time. Tonight I'm exhausted and just want to sleep. Yet, Keeg's sugar tested 89. At 80 I have to actively get his sugar higher. So, I'm trying to stay awake to test again. We haven't dealt with low sugar yet. To say I'm scared is an understatement.

Keeg has had an anxiety attack, or more, each day. Trying to count carbs, juggle insulin, get full, and remember all the info we learned is taking it's toll on both of us. Add to that midnight and 3am checks....I'm exhausted. He sleeps through his midnight and 3am checks and insulin, but I have to make sure I'm up. My alarm now requires me to do math problems with no snooze option, just to make sure I don't sleep through the alarm.

My two best friends, one of which is a CNA has come to stay with us until we get it all under control. Having them here gives me a security I wouldn't otherwise have.

My dear, recently deceased friend has a young niece with Type 1 Diabetes. Her mother has shown me amazing support and I couldn't do it without her. Just knowing she is here for me means so much.

You may recall, the last blog post stated that I knew eventually that someone would say something about his checking sugar and taking insulin in public. Well, it happened. You can read everyone's responses to the situation here:

Response to "Don't Do That In Public"

Please keep us in your thoughts, prayers, positive vibes.

Home....

Yesterday we were released from the hospital. When they told me they were discharging him, I became overwhelmed with nervousness. My son was going home. My son is diabetic. He has Asperger Syndrome. He has immune system issues. I am responsible for making sure his sugar is managed and he doesn't die!

FEAR

I now know a new kind of fear. The fear that comes with worrying you'll give him the wrong amount of insulin. Worried you'll get his long acting and short acting insulin mixed up. Worried you'll sleep through your alarm at midnight or at 3am when you need to get up and check his sugar. Worried that you'll screw up and your child will end up unconscious, in a diabetic coma, or worse. That's REAL FEAR! His other health issues, though severe and potentially life threatening, wasn't like this. This is something we have to manage every second of every day. We don't, he could end up in serious condition! 

Yes, I'm terrified. I'm overwhelmed. I'm scared to death! 

My son has Type 1 Juvenile Diabetes. And I am SCARED. 

We left the hospital with lots of fanfare. All the nurses, childlife advocates, diabetic educators and the rest cheering him on. They all assured me that he would do fine. They were proud of his accomplishments and said that he picked it all up really quick. They showed me phenomenal support as we prepared to leave the hospital. Keeg of course wanted to finish his level on the PS2 game he was playing in the teen room. ;-)

We went to pick up his prescriptions at the pharamacy. Apparently insurance doesn't believe he needs to check his sugar or give himself insulin as often as he does. So, we'll have to get new scripts in 10 days and get more. Another aggravation I could do without....having to run to the pharmacy every 10 days to get lancets and test strips. *sigh

I realized as I was leaving the pharmacy that his insulin has to go in the fridge. Since I knew I wouldn't be back for several hours, I had to go back to the house to drop off his insulin. Then we headed to town. 

As we were headed to town, he reminded me it was snack time. We stopped by a store and spent a good 40 minutes figuring out what snack he could eat that would fit in his 15 grams of carb, but actually fill him up. 

Finally we were actually on our way to town to run errands. Two hours later it was dinner time and I was stumped. Where to go eat that we could easily count carbs and fill him up. Granted, we have his huge carb book, but filling him up is important as well. Someone told us that Taco Bell had a carb menu. So, we went to Taco Bell. Where we spent a good half our figuring out how to feed keeg within his carb levels and still fill him up. The girl at the register, trying to be useful, would make suggestions that she knew dieters chose, but they all had higher carb levels. We finally ordered and sat down to figure out sugar levels and insulin. 

Which is when I discovered................. I'm not the only one that gets squirmish when seeing a needle go into skin. People around us, when we got ready to give insulin, walked away or averted their gaze! One man went pale! 

Now keep in mind, we are not talking about old school syringe. Keeg uses a pen that looks like the photo below to administer his insulin. The needle is super small... looks tiny like an acupuncture needle. Yet, the effect seems to be the same. 

 I am certain at some point in time I will be told that I don't need to administer insulin publicly. I can already see it coming from some well intentioned friend or family member. Yet, I have always taught my children to embrace who they are and what they must do. Both my boys are open about their being on the Autism spectrum. Keeg has always been open about his health issues. I am open about my past experiences and my own health issues. I will never teach them to hide it, to be ashamed or embarrassed of it. Keeg has diabetes. This is his LIFE. It will never go away, it will never get better. I have hopes a cure will be found, but until then this is his reality. We won't hide it away to make others feel better anymore than we hide away that Keeg has Asperger Syndrome. These things do not define who they are, but he does embrace them as a part of who he is. Diabetes is no different. 

I am headed to a store today to find low carb snacks that are filling. To pick up glucose tablets and alcohol swabs. To figure out all that we need now just to survive. 

Keeg's sugars finally hit a normal range at midnight last night. We were so excited! A normal blood sugar!!! At 3am his sugar was 92 and I suddenly realized.... we didn't go through low sugar  at the hospital. 92 is good, but anything below 80 is not good! I started running through all that I knew to do if it dropped lower. This morning and today his sugar has remained in the normal range. I'm excited but know that maintaining a "perfect" sugar level in diabetes is difficult. The slightest thing could cause it to go high..... stress, over exertion, forgetting to count carbs or counting them incorrectly. 

The doc said their is a "honeymoon" stage where sugars stay so level that you start to think maybe you don't really need the insulin. Maybe this is the beginning of that stage. It doesn't last, but it sure would be a nice break right now. 

Keeg will be posting soon about how he feels. He's been a bit to overwhelmed to put it into words and I respect that. He wants to tell the world how he feels though, and when he does I expect that each of you that read this blog will take a moment to comment on his post. 

My son has Type 1 Juvenile Diabetes. He is strong, determined, intelligent, scared, hopeful, overwhelmed and one of the greatest loves of my life. 

Keegan, if you read this.......... I AM SO FLIPPING PROUD OF YOU!

 

Will It Always Be Like This?

We can not go home until Keeg's ketones are normal/trace. Last night they were small. We were ecstatic. We were going to get to go home! They were on their way down. This morning though, they were moderate. By lunchtime, they were back to large.

I had some dumb idea I'd catch up on schoolwork (college) today. I'm so far behind. Yet, I've been in meetings since 8am this morning. I just now got done. I've met with case managers, diabetic counselors, nutritionist, endocrinologist, doctor, social workers, and more. I've learned what to do for low sugar and for high sugar. I've practiced how to inject my son with a special needle if he is unconscious and been instructed to call 911 after. (((SCARY))) I've learned about different lancets, needles, and insulin. I'm in information overload.

My son has diabetes. Diabetes can kill.

Diabetes can kill.

My son has diabetes.

This is where I am today. Stuck on the fact that my son has diabetes and that diabetes can kill.

Stuck on the fact that his sugar has elevated to almost 400 despite getting 16 units of insulin and that his ketones are large despite his being on fluids and drinking a ton of water.

My son has diabetes.

Diabetes can kill.

Roller Coaster

 Late last night we got excited. Keeg's ketones had gone from large to moderate. Large is the worst. Normal/Small is what we have to have to go home. Moderate is a step towards that goal. I almost cried I was so excited and logged back in to Facebook to post the info.

Late last night, the full impact of all of this hit me. My 16 year old son, that suffers from immune system issues and has Asperger Syndrome, now has to deal with diabetes. He will always have to watch what he eats, count carbs, and take shots. He will always have to carry his insulin with him. When he gets sick, he'll have to check his ketones. He will, at some point, get tired of the sticks and numbers.....but his life will depend on his doing it. My son is diabetic. It hit me, and I curled up and wondered.....how will we fit this into all the rest of his treatment? How will we afford it? How will I be able to get the things he needs to survive?

I finally found comfort in the words and support of friends, and fell asleep. Somehow, I thought that the worst was over. I mean, we were in the hospital, he was diagnosed, getting insulin and his ketones had dropped. We were on the right path.

However, things were going to change by morning.

Keeg woke early a.m. with a horrible migraine. His sugar was 192......the lowest yet! However, he was so weak, nauseated, and in pain. He couldn't eat  all his breakfast and we were worried that we may have given him to much insulin just before he ate. Insulin is measured based on the carbs he eats, and he didn't finish his meal. We checked his sugar and it was 242. Even with his insulin and barely eating anything, his sugar had gone up. He was given Ibuprofen. I curled up in bed beside him and held his hand. I laid a washcloth over his eyes to block out the light. He was in pain, and there was nothing I could do.

We both fell asleep, laying in his hospital bed. At 11:10am we woke. His headache was gone, his sugar was up. He went to the bathroom and the nurse checked his ketones. They were back to large. I sat stunned. We were on our way down, how could they now be large again? Would we ever get to go home?

Then, people begin to arrive. Keeg's brother and sister came to hang out. About an hour later his grandparents showed up. Then his friend Amanda came. Everyone had fun hanging out, playing games, and just chilling. We talked about diabetes and what we had learned. We discussed different treatment plans that my dad had, and how others they knew managed theirs. Although the topic of conversation was different, everything else seemed........ NORMAL.

Everyone has gone home now. Keeg is settled into his bed with a PS2. He's talking to his best friend Matthew while he plays video games. His energy level is better. It's almost time for his nightly dose of Lantas, a long acting insulin. They are increasing it tonight based on his morning episode as well as his last two nights breaking out in a sweat and feeling like he was going to be sick.

They may also be increasing his Novolog insulin, which is the immediate acting. We're learning alot, but there is still so much more we need to know.

Today has been a roller coaster for sure!

Oh Crap!!! A Grocery Store Trip!!!!

This evening I headed to the grocery store to get some snacks for Keeg. How hard can it be? Grab a few carb free snacks for a child so he doesn't have to take insulin with his snacks. Easy, right? 

**************NO**************

It was NOT easy! I couldn't find anything! I finally came back with some cheese and packs of Crystal Light! 

I thought I was overwhelmed before. Now though, the full realization of how difficult shopping is going to be has hit me. It seems meat and veggies are the only thing he can have. He does have to have carbs, and the goal is no more than 70 grams (5 servings) per meal. 

I'm sure we'll figure it out, but there is quite a learning curve here. 

****feeling overwhelmed, under-educated, and frightened

OVERWHELMED

Keytones

Long Acting Insulin

Sliding Scale

Carb Count

Insulin Pump

Glucometer

**********

So many things to learn. I feel like an entire college course has been dumped in my lap with a "learn this now".

A nutritionist and endocrinologist will be coming to visit us today. We'll learn more about juvenile diabetes and how to manage it. We'll learn whether he will qualify for an insulin pump. We'll learn how our diets are going to change. I say "our" because myself and my other two children will support him by altering our own eating habits.

I'm scared. He already has so many other health issues. His keytones are staying large even though we've got his sugar down to 225. Health issues are said to cause sugars and keytones to spike. Does this mean each time his immune system goes haywire that we're looking at sugar battles as well?

Keeg cried last night. It was all just to much to take in. He couldn't order enough food to fill him up. With his sugar so high, he had to keep carbs low. Eggs seem to be the bulk of the menu, but he can't eat eggs due to allergies. He can have them baked in foods, but those foods are all high in carbs anyway. Scrambled, boiled....those eggs he can't have.  It was frustrating to say the least.

Add to that the hospital listed eggs as an allergy, excluding him from ordering any food that contains eggs..... he's about to go crazy. I have to order his plates and swap with him so he can eat what he wants. Soooo annoying.

Yet, in the scheme of things, he's alive. We caught it early. His ph level was just high enough to keep him out of PICU. Things could have been a lot worse. Thanking God that they weren't.

We still have a long journey ahead. There is so much to learn. We still have to get through the visits with his other specialist for the return and flare of his immune system issues and his P.A.N.D.A.S.

We're a team...my family. We'll make it though this. 

Here We Go Again.......

It's been quite some time since I've blogged here. I was almost scared to write about how good Keeg seemed to be doing. How, deep down, I hoped that he was somehow miraculously cured and wouldn't be sick anymore. I didn't want to voice my hopes, as I felt somehow that it would cause the fall to be so much worse if it happened.

Yet, I did secretly hope. Recently I even started talking about the "good run" he'd had.

Then it happened.

Several weeks ago, he started to feel tired. Then weak. It has gradually gotten worse. His tics came back. He started to lose focus. He couldn't participate in any physical activity. He wanted to stay at home when I'd go somewhere.

The beast was back. That awful, unnamed immune system disorder that wrecks havoc on his body and leaves him in bed for weeks, or months. He became pale. He started having trouble swallowing and chewing.

Yet, in the last week I noticed a significant change. Something we had not encountered before. Keeg become severely thirsty. He chugged and chugged and chugged water to the point I was worried he was going to have water toxicity. No matter how much he drank, he still appeared dehydrated and thirsty. His lips were dry, his skin dry, and nothing seemed to help.

I knew that he was looking at an in hospital stay soon with his immune system short circuiting again. However, when our family doctor walked in and told me that he needed to go to the hospital immediately, I was dumbstruck. The she said it, "He has juvenile diabetes". I couldn't say anything at first, then croaked out, "How high?". When she told us 486, I felt the room spin. How could my 16 year old son have a sugar level of 486? How could he have diabetes? It runs in our family, but not juvenile onset!

We are sitting in the ER still now. It's been 7 hours and we've only got his sugar down to 309. We'll be admitted to a room on the pediatric floor later, but for now the focus is getting his sugar to go down.

We are embarking on a long journey. One of learning how to manage diets, count carbs, watch sugar, and take insulin. I know it won't be easy, and I can only imagine the changes that will need to take place.

In the midst of this diagnosis, we still have to deal with the fact that his immune system has flared.

What dynamics are added when an Aspie is diagnosed with Diabetes? Will his Asperger Syndrome result in more issues? Will he be able to manage his Diabetes? 

Please, keep him in your prayers.