Minor problems

Yesterday Brody had several small problems with various things. We were glad we were here. His feeding tube had trouble going down his throat and we almost couldn't place it. His blood pressures were on the rise. We soon learned that his BP patch had fallen off. Simply replacing it seems to have helped. And he's been quit agitated. More than likely due to gas pressure in his tummy. His heart rate would get really high and he would tighten up and try to hold his breath. Poor kid. There isn't much of a solution for that right now. We just have to wait for his surgery when we "fix" everything. So, as of right now, our plan is to go home tomorrow or Tuesday. I think we are now ok with this and feel like we can handle it on our own. But I guess we'll see what tomorrow brings.
Thank you to everyone for your comments, prayers and continued support. You are really helping to keep us going strong.

Happy to Stay...For Now

I'm glad we didn't have to be evicted from our hospital space today. Brody's blood pressure is up a little and he'll need some medication adjustments. Also, his potassium is a little high so we'll have to address that. His Ph probe is nearly done and I bet Brody will be glad to be able to have more in his tummy than apple juice. Other than that, we're just hanging out. Waiting for all the loose ends to come together.

Getting the Boot?

Shortly after my last post, I returned to Brody's bedside and was informed that he was going home tomorrow. Brody still has multiple health concerns that have not been fully addressed. Also, we were anticipating to meet with surgeons early next week to discuss the various GI procedures we need to consider. I told the PICU team that he just isn't ready and doesn't have the necessary equipment. They told me they would "make it work". Joss arrived today and was made it clear that we don't feel Brody is ready and we are NOT going home under these conditions. His emotions took over and he started saying things like, he's already held his sons lifeless body once and he'll be damned if he'll do it again just to clear up a bed space. They quickly backed off and said we'd wait until we met with the surgeons and go from there. Through it all, Joss was good not to raise his voice and handled himself pretty well. He soon apologized for letting letting loose, but at least he got our point across and got them to listen. :)

Surgery Delays

Despite earlier predictions, Brody will not be getting surgery on Monday. In fact, the surgeon I spoke to today said they'd be surprised if he'd get it at all next week. So we're looking more into the first part of May. At one point, we were told to anticipate him still getting his scheduled VEPTR procedure May 8, but now that would put those surgeries within a couple days of each other and it just seems a little risky. So, at a cost of roughly $6,000 a day... we wait!

Slow to Go

The doctors tell me that Brody has a slow GI tract. I was not surprised since he's always been a little "slow to go". It appears that his stomach is tilted and his intestines are twisted. He doesn't have any bowel obstructions or anything but he has potential for problems in the future. So, in addition to a G Tube placement Mon or Tues, he will likely have his stomach and intestines repositioned. Its unlikely he'll have the Nissin procedure but we haven't ruled it out yet. None of these GI issues seem to be bothering him much. Last night, he laughed at me. The full belly shake, big toothy grin, and the twinkle in his eye. It may have been gas or something but I'm going to take credit for it anyway. Either way, it was nice to see what resembled happiness. And that moment alone makes this horrible experience all worth it in the end.