Friday, October 8, 2010

No Tube Today.

OK. I will make this short and sweet.

We saw Dr. Freedman yesterday. He's awesome. Super Duper Awesome. He's great with Patrick of course. He's got an incredible talent for numbers and is on top of every little detail as if Patrick were his only patient. Part of why I love him so much is because he trusts me, and he trusts my instincts. He trusts that Patrick's Mom actually knows a lot about her Little Lovey.

I talked with him yesterday about trying a day without the tube. And he was all for it. He knows that I'm not going to not feed Patrick. I'm not going to let him get dehydrated or lose weight. He trusts me. And that is empowering.

The plan was this: Wake up Patrick at 7 a.m. and give him his medication via the tube. Then remove the tube and let the feeding frenzy begin.

Yeah, right.

Here's what actually happened.

At 2:30 this morning, while I was already up (consoling Luke after his latest in a series of nightmares) I heard a slight cough/gag coming from Patrick's crib. When I checked on Patrick I found him holding his tube in one hand, and smiling from ear to ear.

The tube was out.

We shut the pump off and just let him go back to sleep. We all went back to sleep.

I wish I could report that Patrick awoke, hungry and ready to eat. Quite the contrary.

His visiting nurse was here at 8:00 a.m. for her twice-weekly check up. She helped me give him his meds by mouth which he despised... I tried feeding him a bottle, I tried feeding him solids, I tried veggies, I tried fruits, I tried cereal, I even gave him a taste of chocolate. The reality is that the entire day went by and he hardly consumed a thing. A teaspoon here or there of baby food. A few drips of milk on occasion.

By 4:45 p.m., I replaced the tube and started his feeding.

So disappointing. But all was not lost. Patrick had a delightful day. Played happily (no throwing up! -- his tummy was too empty...), looked adorable sans tube...

We will try it again. Soon. Maybe Sunday.

I'll keep you posted!

Sunday, October 3, 2010

To Tube, or Not To Tube.

That is the Question.

Earlier this week, Patrick pulled out his NG Tube. Its not the first time this happened, for sure. But as he gets older and bigger, it becomes more challenging to keep that tube firmly taped to his cheek. He's busy these days, exploring everything he can with his new found friends: Fingers and Hands. So, it doesn't take much for him to grab a hold of that tube and just keep on tugging. Which, apparently, is what he was doing as he laid so quietly in his crib after a nap.

Tug. Tug. Tug. Voila! It's out!

There was a time when this would have sent me into a tailspin, but honestly, now its not the end of the world to put the tube back in. Don't get me wrong, I sure don't love doing it. But its just a part of taking care of him that Jeff and I have had to get used to.

[Sidebar: To replace the tube, I have to swaddle him tightly (to lock down his annoyingly curious comrades: Fingers and Hands), then push the tube in his nostril, all the way down to his tummy. Of course, he's no happier about this than I am, so its all done with the lull of his screaming in the background -- understandably, though.... I can only imagine how uncomfortable it must be. Once the tube is in place, we have to check placement by pushing a little air in through the tube (with a syringe) while listening to his tummy through the stethescope. There is a distinctive "whoosh" sound that is heard. When you hear that air "whoosh" into his tummy, you know you've done it right. Then just tape that tube to his cheeck, and you're ready to roll.]

So, where was I?

Oh yes. To Tube, or Not to Tube.

After Patrick removed his tube, Jeff and I decided to leave it out for a few hours, since Patrick was not due for another feeding for awhile. We thought we'd just give him a break. And, I just couldn't get over how different he looked without having the tube taped to his cheek.

More adorable than before. (Albeit, serious!)

Throwing caution to the wind (and calling on friends and family for some more of their prayer power), I mixed up a bottle for Patrick and brought this Little Lovey upstairs. I sat with him in the rocking chair. The lights were dim, it was quiet and relaxing. And I put the bottle in his mouth.

And he drank from it. He drank almost an ounce -- nonstop.

Then he fell asleep.

It was so normal. But not for Patrick. This was a B-I-G DEAL for him.

We would have left the tube out all night, but because he was so sleepy I just couldn't get him to drink from it again. So, in went the tube. Again.

So the working theory is this: When Patrick swallows, the NG Tube bumps the back of his throat, therefore making swallowing so uncomfortable, he prefers not to swallow at all.

I'd like to try a day or two without the tube and see how much he will drink in a day. But, I'll consult the pediatrician before I make such a drastic move.

Luckily, our next appointment is this coming Thursday. It will be The First Question on my list.

I hope you'll stay tuned. :-)