Saturday, February 09, 2008

Tube News

Overall, things have improved greatly with the whole g-tube thing. It is really, really wonderful to know he is getting enough calories every day now. I guess I didn't acknowledge how much stress it was to keep track of his calories and see how he was failing every day to meet any kind of even minimal calorie needs. His school isn't calling me every day to say his pump is beeping and what do they need to do. It still beeps, (I asked) but they know what to do now. Little Man is more cooperative than we expected with the cleaning and dressing and dragging the pump along with him. He continues to be more cheerful and laughing every day, which is an incredible blessing. Once more, I hadn't realized how bad it had gotten until it stopped. He is back to his usual oppositional self, but now with more smiles! As the dietician said at the Large City Sick Kids R Us, his quality of life has improved. Yes it has and along with it, ours!
Now, the not so great news. We lost our Sat. respite person over the tube. (At least that is what we think) She was asked to be trained in emergency g-tube care and said she couldn't come to the first training. When another training was scheduled for her, she quit the day before. So there ya go. No respite until they find someone else. It is a shame because she was really good with Little Man and we liked her. But I understand, some people are seriously squicked out by the tube.
That leads me to the seriously squicky part. Ewww. *****Gross out warning.******
Pea gave Little Man her cold. And while we do encourage her to share, this was a bit over the top! So snuffly, coughy boy. I guess I had never thought about what happens when a kid is snuffling and swallowing mucus. The med port cap popped open yesterday when I was trying to get his feeding hooked up and I got to find out! Eeewww! A tummy full of mucus poured out on the towel I always have handy. Not because something always goes wrong when I am hooking or venting, but because when it does, oh my gosh, gross is far too pale a word for what happens. Yuck.
****** end of grossness******
Last night, after the boy had fallen asleep, I asked Bald Man if he had remembered to give the child his cold medicine for his nose and cough. Opps! No he hadn't. I sighed with disappointment thinking how much I wasn't going to enjoy having to wake up in a few hours with him really coughing and snuffling. Bald Man, with a light bulb lighting over his head, said; "if you get his meds in a liquid form, we can just squirt them in his tube!" And so we did. Wow. Kind of handy dandy that was.
And on it goes! My turn for Church tomorrow and I am looking forward to it. Today, I shall run away for a bit, I have a couple of new books and ya know, life is pretty good. My hubby loves me, (he is still here, isn't he?) no one is causing too much trouble and even though we don't have respite this weekend, I am feeling pretty darn happy with my life. This my friends, let me share one of tools I use and is one reason why:

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

I can not fix my boy, and so many other things in my life. But I can be grateful for his wonderful health insurance, and for the medical stuff that keeps him alive and healthy. While his life will never be what I hoped, with God's grace, I can either find the strength or the peace I need. I am blessed.

P.S. One of the things I can change, and will need to screw up my courage to do so: our upstairs neighbors? Well, they woke us up last night with some SERIOUS thumping of the headboard that went on and on. I really need to go up there and ask them to proceed about their business with less noise. Come on, you wouldn't notice that you were make loud thudding noises? I am guessing they didn't realize we could hear it. LIFE!

1 Kids Who Want To Play:

Yondalla said...

Okay...gross. I mean really gross.

I hope you get a respite person soon! You deserve it.