Update: Immunology, New Insulin, and more...

First, my apologies. So many of you have asked me for updates on Keeg. In all truth, after our visit with immunology, I shied away from blogging. Putting into words all I felt at that time was a bit to much. Now though, I've had some time to process and deal, and now is the time to share.

Keeg visited his immunologist. We had more labs run (ALOT) and are still waiting results. We have been referred (again) to an allergist, hematology, and geneticist. As soon as lab results come back, we will lay out a plan for immunotherapy. Basically, the docs want to start manipulating his immune system to see if they can get it to quit attacking his own body. I don't have a lot of details, but will at a future visit. Hopefully, the worst case scenario is just that.... a scenario and not reality. Worst case being that he is Type 1 Diabetic because his immune system attacked his own pancreas, as it may do other organs.

Keeg is having difficulty swallowing. It feels like something is stuck in his throat. Food does get stuck in his throat. He's been tested for cilia dysfunction previously, but it looks like we'll be referred back to the ENT to test again. It's a horrible battle. He has to count his carbs for his meal, take insulin based on those carbs, then eat the amount of food he counted carbs for. However, when he gets to where he can't swallow, it results in his having taken to much insulin. He has to take his insulin BEFORE he eats, so inability to finish his meal really messes up his sugar level!

Keeg stays tired. Although we had hoped this would clear up in a few weeks due to diabetic management, it appears that his immune system is still wreaking havoc. He is so weak, tired, even lethargic at times. Apologetic....a thousand times a day he apologizes for not being able to help, for needing assistance, or for just being unable to play and have fun.

Today was our endochronology visit. Keeg has had to come off his Lantis pen because it burns him so terribly bad. There is another long acting insulin pen out, but insurance won't cover the pen. So, we came home with actually syringes and vials of insulin today. First dose is in half an hour. I'm nervous, but don't want him to know. I've never stuck a syringe in anyone before! Thank goodness my friend is here and that she is a CNA and former EMT. I don't know how I'd do it if it were just me!

Keeg's A1C has dropped from 12  (yes, it was 12!!!!) to 8.5. So, we celebrated a bit when we heard that one! Yay!

Keeg watched a friend making a huge breakfast of hashbrowns, biscuits and gravy, sausage, eggs, toast, etc. He ran outside, sat on the steps, busted out crying and yelled, "I hate diabetes". Our friend took him to the grocery store and worked to find a way to feed him a breakfast of thing she liked, while keeping it in his carb limit. It's difficult.

We have found that Quinoa is great for him. He gets to eat what appears to be a large quantity of food, it fills him up, and it's super yummy and good for us!

We are still learning. We still goof up often (like those times we get to busy running errands and don't have food to eat). We discovered that cheesecake is a dessert that he can have, which is good because who doesn't like homemade cheesecake? And contrary to a certain Yankee's opinion (you know who you are), cheesecake with Splenda is AWESOMENESS.

We have weeks lined with specialist appointments, testing, and more. I'm holding onto my faith that God will come through and provide me with the computer jobs I need so that we can make some much needed money. He has always provided before, and I'm sure he will now.

As some of you know, we've been fostering dogs that are pulled from gassing shelters. It's been therapeutic for our family..... seeing abused, neglected, rejected and abandoned dogs. Also, dogs that have such a wide variety of health issues. Their unconditional love, in the midst of their pain at human's hands is an inspiration in itself. It has helped our family to be acutely aware of the pain many suffer, and how we can make a difference. It helps to take the attention from our own pains, health issues, financial problems, and more. Saving dogs lives touches you in a way that nothing else can.

Despite all our family battles now, we are together. We love each other. We are a team.

Nothing else really matters.

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.

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!