What was steady but painfully slow progress seems to have matured into simply steady progress over the past 2 days. A few highlights:
– He’s been sleeping a lot and appears to be more comfortable.
– His belly is almost back to normal (at least it looks so to me).
– His white blood cell count is trending down.
– His belly incision is less red and looks to be healing
– They are going to remove the retention sutures from his belly incision.
– His stomach and intestines seem to waking up as they are handling milk just fine.
– He smiled today at his mom.
All of the above makes me happy, although to be honest, I seem to be a little numb to that feeling right now. It’s hard to explain why I’m not feeling more excited, because it wasn’t that long ago I was struggling big time with every single thing that didn’t go right and feeling huge waves of relief every time something did.
I’ve noticed it works both ways, though. A few days ago Oliver wriggled his central line out of his neck in the middle of the night and the nurses spent several hours trying to get various IVs back into his system to keep his medications on schedule. If you recall (see Oliver Update 2013-10-05), the last time his central line came out, he had what turned out to be a catastrophic setback that may have played a big part in the events that led to his abdominal surgery. To my surprise, this situation didn’t make me as sick as it would have in the past. I believe part of it is that it truly wasn’t a huge emergency, but I feel that a big part of it was that I’m simply to the point where I’m no longer capable of extreme emotion in either direction. Hopefully it comes back. I want to go back to the good old days when waking up to find dog poop in the house aroused extreme anger, resulting in declarations to Shawna that her failure to let the dogs out the night before rendered my morning the worst morning in the history of the universe. Joey Dwyer style.
Here’s a picture of a sunrise I took leaving UNC hospital a few mornings ago.
Much like last time, there isn’t a ton to report. His healing is slowly but surely coming along, it seems to me. They are weaning him off certain pain killers and starting new ones to keep him comfortable. His belly is still big, but it’s definitely looking better. He’s not comfortable when awake, but he’s not quite as agitated as he seemed days ago, and he’s been sleeping a little longer and more soundly over the past two days. I’ve said it before and it’s burned me, but I’ll say it again… things are looking up, I think.
Except for his balloons, that is. Oliver’s been here so long even his balloons are getting sad.
Oliver has made slow progress since his last surgery, but today marked a milestone of sorts, as Oliver’s breathing tube was removed. Oliver traded his horribly uncomfortable plastic breathing tube for a sore throat and sad, hoarse vocal chords. He started crying next to me earlier and he could hardly be heard. He was mad but making the softest most pitiful cries you’ve ever heard. Sad though it definitely is, he seems to be moving in the right direction, which is a welcome sign.
I’m tired of the ups and downs, but I’m relieved to report that Oliver’s surgery, according to the surgeon, “went as well as it could have and better than expected, actually.” They opened Ollie up and found a small section of the colon that was dead and perforated, and they removed that. They checked the remainder of his bowels and found nothing wrong.
This is fantastic news for 2 reasons. First, they removed something dead that needed to go, but it wasn’t such a big section that it will result in any long term issues (cross your fingers). Second, they likely identified what it was that was making Oliver so sick these past 5 days or so. And he was really sick, with his giant bloated tummy. I felt so bad; he would wake up briefly from time to time and be in pain, and it was getting hard to watch.
The unfortunate news is that his hospital stay will be dramatically extended. He has a temporary ostomy bag and will likely be here until his bowels can be reattached, although there is a small chance we can take him home if everything looks manageable. That’s weeks away at least.
So it looks like I’ll become even more familiar with my favorite chair. After today, however, you’ll never hear me complain about sleeping in that chair again. In fact, right now, Ollie’s sleeping peacefully, and I can’t wait to join him.
Here is a picture of my little trooper.
Unfortunately, things have worsened. Oliver’s tummy got a little bigger over the course of the day, and about 2 hours ago, they detected a perforation in his intestines. They have taken him away, and Ollie is currently undergoing emergency exploratory surgery to look at his intestines. They will take out the perforated section. What we are hoping for is that they do not find additional sections that are damaged. My heart aches.
This is nothing more than an update on Oliver’s status at the end of what turned out to be a long day. Today wasn’t the worst day in that there hasn’t been any particular thing that could be considered a huge setback, but collectively, it definitely wasn’t a good day. Oliver’s fluid levels for the day are close to even, meaning his didn’t lose as much fluid as the previous two days. He now has a skin wound/infection close to where the old central IV was connected to his leg. He spiked a mild fever earlier, and it didn’t last long, but he currently is running another fever that seems to be just a bit more persistent. His abdomen continues to be bloated and swollen (distended bowels), and they think it’s most likely the result of his intestines “sleeping” from the surgery and not waking up yet. If they are correct, then no action will be required and it should just get better with time and rest. They are monitoring his belly pretty closely, however, and if they feel the problem is getting worse, they may perform another surgical procedure to remove a small, possibly problematic portion of one of his intestines. That would suck. And remember when I said that his pulmonary valve wasn’t leaking? Apparently, it is now. This leaking valve likely won’t present any problems or lifestyle limitations later in life, but I was still pretty excited when I found out after his surgery that his valve wasn’t leaking (reduced chance of additional surgery later in life), and so I’m a bit disappointed to find out that it is now.
Hopefully tomorrow brings better news. Let’s turn the corner, little man. We’re due.
10/10/2013, 10:00 pm
I probably shouldn’t write in this blog while frustrated (see last post), especially when the blog subtitle specifically mentions “staying positive and finding humor in all that life brings.” I do feel quite certain that he will eventually recover, which is the most important thing. About 50 times over the past 2 days I’ve needed to take a deep breath and remind myself of that. I was, however, hoping to be out of the hospital altogether by now, instead of looking at days more in the ICU, followed by a few days on the 5th floor, before our release into the wild. And, truth be told, I’m still a little nervous that one of these small setbacks will turn into something big. I have a feeling it’s impossible to be worried about something for 5 months and then suddenly turn it off, even if things are looking up.
His latest fever (earlier this morning) was controlled relatively quickly again. They’re running several tests to determine if he actually has an infection somewhere in his body. All tests so far have been negative, which is great. There are a few other things going on with his intestines, but currently the biggest obstacle remains his overall swelling/edema. They won’t remove the breathing tube until his swelling goes down, and as of yesterday, they estimated he has about 1 liter (1000 cc) of excess fluid that needs to lose before that can safely be done. He lost 120 cc yesterday and is doing about the same today, which means that in roughly 6 more days (with no other setbacks), he should be just about ready to get out of here. Perhaps he’ll start peeing a bit more and shorten that timeline.
One positive from today was that they pulled out the wires for the external pacemaker. Although Oliver had been unplugged from it for a couple days, they left the wires inside his body just in case he reverted to a junctional rhythm and needed to be “paced.” I guess this means they believe his heart to be healed. Amen!
The picture below (Dan, Joe, and I at Red Rocks) illustrates how I will feel the day we get out of here.