Day 105

Well, we may have made some progress yesterday afternoon. Holden pulled out his feeding tube again, but it actually turned into a learning experience. (Until we had to put it back in last night... That part will never stop sucking.) Once the tube was out, he didn't throw up all afternoon- until we gagged him while forcing meds down his throat- and he ate more in those few hours than he has eaten every other day here combined! So now I wonder if many of his problems (his digestive problems, at least) couldn't be solved if we took the tube out? That's another rock and a hard place though, as he needs the nutrition we can provide through the tube. Another option is to put a feeding tube straight into his stomach instead of down his throat, but that involves a surgery. It's a minor surgery, but I don't think his heart surgeons will approve any surgery until his transplant. This is yet another frustrating dilemna... We're all trying to come up with ideas, so please pray that one of us will be able to come up with something brilliant!

It seems he rediscovered his attitude along with his appetite yesterday... He was being such a mean little thing all afternoon! He didn't want to go to sleep, so he became intent on ripping the glasses off of my face, trying to remove my nose with his hands, biting my fingers off and headbutting. Bad behaivor, yes- but passion nonetheless. And passion is what I like to see in my brave little fighter. If we can just get his body to match his mind, there's no limit to what this little man can do. It's past time to give his body a fighting chance at keeping up with his spirit.

Of course, we had to put the tube back in last night, and now we're back to our new version of normal. I don't like this version- I hate this version- and I want my feisty little man from yesterday back. This just reminds me that we're not really in a better place, it was just a day of reprieve, but at least I have a ray of hope to hold on to now. If we can get his digestive and respiratory issues under control- even if they're just barely under control, we can start thinking about going home. To our real home. I want him to have the chance to sleep in his own crib before he outgrows it. Thankfully, he seems quite content in the monkey cage here at the hospital, as long as his drugs are delivered promptly. So he sleeps and I type, hopeful that yesterday's accidental little twist of fate provides the jump start we need to find our way to the exit door. I'm well aware that it won't be a permanent exit, that we'll be right back here when he gets his new heart. But those are thoughts for another day. Right now I can only think of right now. Patience continues to wear thin though, so it would be great if we could move along the timetable a bit. It's all up to Holden, and I have a feeling he's just waiting for the chance to show us what he's really made of. Of course, it's just like Holden to decide how this is all going to happen. This is his show, 100 percent, and he's reminding us once again that he's running it.