Thursday, December 04, 2008

A New Addition!

Her name is Ruby. Ruby Tubey to be exact. Her first day in our home, we gave her surgery without any anesthetic. Bald Man did her surgery with a exacto knife. First he gave her a stoma and then he opened up her whole belly. Then he cauterized her stoma with a lighter. But she didn't seem to mind. Look she is still smiling!

Then we gave her a tubey just like Little Man's. Once more Ruby didn't seem to mind a bit. In fact, she told us she was willing to donate her little plastic body for the advancement of medicine.


Here is how she looks from the inside. I think Little Man wouldn't tolerate us doing this to him, but it is interesting to see how his tube is inflated from the inside. This holds it in, so we can feed him his formula through the button.

This is what his g tube looks like when it is inflated, but quite obviously, NOT inside him.

We hook up a tube to the button and then use a pump to pump the formula into him. He gets most of his feeds at night, but he also gets another one during the day. If for some reason his tube should come out, either by the balloon at the end popping or if it, (HORRORS!) got pulled out, it needs to be replaced fairly quickly. You have about 20 minutes or you are up a creek. We would have to go back to the hospital and he would have to endure some mighty unpleasant procedures to replace the tube.
This means anyone who is left with Little Man must be trained in emergency tube care. Taadaa! Here is where Ruby comes in. On Tues I had to teach a class for tube care to his therapeutic afterschool program. I thought Ruby would help quite a bit in helping them understand what needed to be done if his tube comes out unexpectedly. Ruby was happy to help and was well behaved during the presentation.
We have to keep an emergency kit with him at all times. He has one at school, one in his feeding backpack and one in his regular backpack. I don't see how we could be more covered unless we taped one to his back too. I don't think Little Man would like it, so I won't try it, but otherwise it seems like a good idea!
And in the catorgory of other medical news that I haven't wanted to talk about is that Little Man is having seizures every night again. I was really unhappy with the neurology office. First, it took them a week and half to return my call and I still had to call AGAIN to get them to talk to me. The PA I spoke with pretty much bulldozed me and we have raised his depakote. This makes me royally unhappy because every time we raise it, the depakote makes his bone marrow act funky. Last time it recovered, so maybe it will this time. The last time we had his dosage this high, it actually caused his body to begin to destroy his red blood cells and we had to pull him way down on the dosage. The PA refused to listen to me, and sometimes you just have to roll over, happy about it or not. We go in next Monday and start the weekly blood tests to see how his body is handling this dosage. So far, no relief in sight for the seizures. Really, it makes me sick to my stomach to think about them.
For my newer readers (and older too!) feel free to ask any questions if you want more info on Little Man and his medical adventures.

14 Kids Who Want To Play:

Stefanie said...

Okay, now I'm more scared. But, I'm sorry about your little guy. I can't bear dealing with doctors most of the time. It's sooo frustrating. I wish us both well.

The Boob Nazi said...

Why does he need the feeding tube?

Torina said...

Oh, Little Man. Why are doctors offices so SLOW?! GRRR. Seizures are freakin' serious shiz! I hope you find a solution FAST. That sounds so SCARY.

Kristina P. said...

I love the doll idea. You guys are awesome.

Sheri said...

Many prayers being sent in your direction!!!

rychelle said...

what a good little patient ruby was, and a helpful learning tool too.

i always learn something new and interesting when i visit your blog.

K J and the kids said...

What a GREAT idea using the doll.
I mean, cutting her stomach open was a little sick, but I get why you had to do it :)
I will say that I feel slightly prepared to replace a tube just from this short post. hee hee

Sorry about the seizures..I hope the meds help and not hurt.

Soxy Deb said...

That's good that you have everyone around him trained for the possibility of the tube falling out. And Ruby is very cool. Thanks for the lesson.
I hope they can get his seizures back under control. I know this is troubling for you becuase it's so bad for him.

CaJoh said...

Very clever of you— visuals always help.

Hope things improve for Little Man.

Nicki Mann said...

Whoa, Poor Ruby Tubey, that looks like a painful operation! I can totally see why Little Man probably wouldn't like you cutting open his stomach so we blog readers could see whats going on in there! Interesting post though... I've never quite understood how it worked!

Amber said...

That (the doll) is awesome. Thanks for the information- I'm always up for learning new things. You guys amaze me. Thanks for today- I so needed it!

(my word verification is 'mentle'- I think it's fate).

elizasmom said...

Wow, cool explanation. NOT cool that you have to deal with contingencies such as these, of course, but thanks for giving us a peak into what it's like.

Susie said...

Poor boy! I hope the seizures stop! The doll idea is a great one. I know if I had to learn, I would prefer to learn on a doll, rather than a real live person. That would just make me way too nervous.

Jami said...

Oh poor guy. What a cool doll though. You are such good parents.

How's it going with the seizures now? And the bone marrow?