Friday, December 17, 2010

Worsening Symptoms

Well, phhht.

I know I have been doing a lot the last few days...making Christmas cookies for Doug's work, and my new hobby, candy making. I'm up to two-layers in one candy mold. (I know, you can sleep better at night now, right?) Next, who knows, maybe...fillings! I know....calm down...try to restrain yourselves....

Anywho. I made a bunch more candy last night to put in a box for my mom and dad. They are in Florida over Christmas (although they probably won't get the box in time for Christmas because I'm waiting on pictures from snapfish). I think I made about 100 pieces last night. The night before that, I made yellow cookie bars, white-chocolate dipped pretzels, peppermint bark, and a butt load of candy. All that after going to the doctor and 2 stores, and I was already exhausted. I just don't know when to say when.

So last night I can't breathe. I mean like can't get air into my lungs because they already felt full of air. I'm fighting with my trach again. It keeps moving out of place, enough so that I can tell the difference in airflow. But continuing to muscle it back into the right place hurts like a mother. So I shove it back in place last night, so I shouldn't have had issues. Yet as I lay in bed, I can barely get air in. Oddly, I'm not panicked. I can tell that it's not my actual lungs, like before when my muscles were strong enough but my lungs were so asthmatic I couldn't breathe.

This was just like I couldn't make my diaphragm muscles or the muscles on the outside wall of my chest to move. So I'm taking these quick little shallow breaths. Fun. I'm wondering if that's why I can't sleep. Before I was first diagnosed I had horrible insomnia. My body was keeping itself awake, because it was dying when I slept!

Seriously, is that not amazing? As sick as I was, my body knew that if I kept sleeping I would have quit breathing long enough to die. God is amazing. That's just ONE tiny way in which He so intriciately made us.

I have one option for improving my sleep dramatically, and probably my energy: A BiPAP. It's basically as close to a ventilator as you can get without being in the hospital. It helps you breathe in AND out. A C-PAP just forces air in. Thing is, I would need a Shiley trach.

The trach I have now, which although I have issues at times, and it causes pain sometimes, is NOTHING compared to the Shiley. I think the devil himself designed the Shiley. If you're unconscious on a vent, yah, fine. But being a living, moving human being, not so much. I cough SO much more with a Shiley. It's way more irritating and painful. It's hideous to change. It's harder to clean. I need suction constantly. I have to have this horrible white foam band around my neck (I have enough hot flashes already!)

So I have to weigh the consequences of decreased breathing and oxygenation at night (which does vary...right now it's just really bad. Sometimes it's much better) OR living in daily hell from the Shiley, but have more energy (maybe) and sleep a bit better.

What a crappy decision to have to make.

However, I must remember that I am not my own. My life was paid for. The cost was Christ crucified. And so the Word tells me that as I glory in Him, so I suffer in Him. So I guess compared to being flogged, mocked and crucified my troubles aren't nearly as heavy as the Cross He bore for my eternal health and well-being. I just have to try to stay focused on that, and take it one baby step at a time.


LRHG said...

I'm so sorry you have to walk this path, Kerri, but so glad you can do it with the God that loves us even in our sorrow and grief and trials....


meeyeehere said...

I am sorry you have to go through so much.That must be very hard.
Thank you for coming by my blog and writing about your child.I have wondered if my son has this Sensory problem!He only eats meat!He will not eat anything off a spoon,he hates wet food and he lives off of meat,bread and crackers mostly.He has such music ability but if you try to play music he has to be held and he most of the times can't handle listening to it,he will cry or start to shake out of fear.He has just these little things that are very odd but I have wondered if he has that SPD before.I am curious if they believe it is passed on through families at all? I was like this so much as a child!I was maybe even worse and the school I went to had me tested for everything under the sun but only could come up the theory I had ADD even though I really have none of those symptoms.

Renee Ann said...

I can't even imagine what you're going through as you have to make this decision. Praying for you and wishing you peace . . .

CoconutPalmDesigns said...

What a horrible decision to have to make. I pray God leads you to the right one!

Cheers and Happy Holidays :-)
- CoconutPalmDesigns

Rachel said...

I'm sorry you're having such a difficult time right now, regardless of what decision you make I know you will find the strength, with God's help.

Patty Ann said...

Kerri, I am so sorry. There is nothing I can say to make it any better. I will just remind you that you are loved and He is aware of what you are going through. I hope you are able to make the decision that is best for you. I hope that your breathing improves and that you have the energy you need. He really does love you.