Oliver Update 2013-10-10 (revised)

Some new information:

10/10/2013, 11:00 am
Ollie spiked another fever this morning (he had another one briefly a few nights ago, but it went away quickly). Although they aren’t sure, they suspect his central line (in his femoral artery) may be infected since there is a little redness in that area. So they just put in a new central line (neck) and they are giving him another round of antibiotics.

In the meantime, they are going to do an ultrasound on his abdomen because they’re trying to figure out where exactly all this fluid is hiding. He also has a bunch of air in his stomach, and possibly his intestines, which will be confirmed after the ultrasound. I’m sure there will be new medicines and a new weight loss plan soon. Here is a picture my mom took of Oliver the day before his surgery.

Ollie bumbo

10/10/2013, 2:00 am
The doctors recently decided to change Oliver’s diet in order to achieve his new weight loss goals. After removing Milrinone, Vasopressin, Lasix, Albumin, and Esmolol, his new intake consists of Dexmedetomidine, Fentanyl, Propranelol, fat emulsion, and breast milk. It’s so simple. I can’t believe I didn’t suggest it sooner.

He is, in fact, finally starting to lose a little fluid, although it is slow going. They think he needs to lose about a liter (1000 cc) before they’ll remove the breathing tube. Yesterday he lost about 120 cc. Obviously I’m hoping he picks it up a bit. I’d prefer to not be in the ICU for another 8 days.

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Oliver Update 2013-10-08

After feeling my frustration grow over the past 2 days, I have some good news to share this am. On day 5 post-surgery, Oliver’s heart decided to start functioning properly. Finally! This is especially welcome news after a new doctor, and let’s call her blunt, stopped by last night and said, “His heart is running out of time. He’s already on day 5 and we only let them get to day 9 or 10 before we decide they need a permanent pacemaker.”

Running out of time? Thanks, doctor, for your choice of verbiage. Anyway, below are some images from the monitor he’s hooked up to right now. I took yesterday’s picture for no reason at all. Now I’m glad I did so we have a comparison for today’s picture. I should have taken one on Saturday when his heart rate was in the 180s.

Ollie heart rate monitor

Seeing his heart in “Sinus” rhythm (i.e., the electric signal that tells the various muscles in the heart to contract is originating in the correct location and traveling through the correct pathway, which makes all the heart muscles “fire” in the right order) is a huge relief, because it means he likely won’t need a permanent pacemaker. It’s only been a couple hours, and he could, of course, slip back into a junctional heart rhythm, but even if so, the fact that his heart CAN perform normally on its own means that once fully healed, it probably will.

He’s still got some breathing issues going on. He’s also very swollen and filled with fluid, which isn’t helping anything (and is probably causing some of the breathing difficulty). So Ollie’s goal is to lose a few extra pounds. You and me both, buddy. 🙂

Oliver Update 2013-10-06

I know people are looking for updates, so here we go. I try not to be too superstitious about these types of things, but the baseball player in me can’t help it, and the last time I posted something positive he had a setback, so I don’t want to jinx anything. That being said, I’m hesitant, but happy, to report that things are starting to slowly improve.

As you know, yesterday morning he had a setback and a bunch of things went wrong (e.g., heart rate, heart rhythm, blood pressure, breathing stability, oxygen levels, etc). Scary stuff, although the nurses told us most of the things we were seeing are normal for these types of patients. I’m beginning to admire these nurses/doctors for their ability to make seemingly serious events seem “normal”, although I don’t like the feeling that I’m not being told the whole truth in an effort keep me from feeling anxious. Regardless, they spent a large portion of the morning and afternoon tinkering with different medicines, dosages, positions, ventilator settings, and pacer settings to get him stable, which eventually they did, although his heart rate was still a bit too high and his blood pressure a bit too low.

I spent last night with Oliver in the hospital, and that’s really where things start to improve. The effect of various medicines resulted in his heart rate coming down to just barely above the normal range, and today his heart rate continues to slowly fall to where they would like to see it. His blood pressure has improved and stabilized, although it fluctuates a little here and there. His heart still needs the pacemaker because his rhythm continues to be “junctional”, meaning the chambers aren’t firing in exactly the right order. The doctors seem pretty positive that will fix itself over time, although it could be up to a week before that happens.

Their focus today has been to get some of Oliver’s swelling down. He is still a little puffy, which is affecting his blood pressure and his breathing, as he has a little bit of fluid in one of his lungs.

After re-reading this post, perhaps this all sounds a little scarier than things really are. Overall, he’s doing well and I definitely feel like things have improved over the past 24 hours. They seem to be taking things very slowly now, and thus his recovery in the ICU might be a little slower than originally anticipated, but the signs still point to full recovery. And for that I’m happy.

For now, here’s a picture of my new bed, which I remember well from Oliver’s newborn ICU days. At least it reclines.

2013-10-05 22.53.49

Oliver Update 2013-10-05

Oliver had a bit of a setback at roughly 4:00 am this morning. He got agitated, his heart rhythm got out of whack, and his oxygen saturation levels dropped. As a result, they have done two procedures this morning, including putting his breathing tube back in and inserting a “central line”, which is basically a deeper IV placed in a more major blood vessel.

On Thursday afternoon/evening, they tried several times to insert a central line using less invasive methods. These central lines are used to deliver medicines specifically designed to help the heart relax and regain the proper rhythm. These medicines can do damage to the tissue and/or blood vessels if administered through a regular IV, so they like to administer them through a central line. Because they couldn’t get the central line in on Thursday and because Oliver seemed to be doing so well on Thursday, however, they decided to skip inserting the central line in hopes that he simply wouldn’t need it (or those medicines). On Friday, it looked like the right decision. When he had his setback this morning, they decided it was necessary to put in a central line using a more invasive procedure.

Essentially what all this means is that we are basically starting over with his recovery. He will be sedated and on a ventilator until they can get his heart rhythm under control. Then they will slowly wean him off everything. Like I said… no cake walk in the park, but I think the signs point to (eventual) recovery.

Oliver turned 5 months old today.

Oliver Update 2013-10-04

It’s the morning, and it feels good. I know he’s still in intensive care, and this recovery isn’t going to be a cake walk in the park for any of us, but my emotions are in check today, and things are looking positive.

Oliver’s surgery went well, the surgeon found nothing unexpected, and he was able to (1) repair the hole between the ventricles and (2) open up the pulmonary artery without creating a leaky pulmonary valve (a personal concern of mine because this is a big factor in determining if/when he would need additional surgeries later in life). This is fantastic.

As a result of the trauma to his heart, however, his heart isn’t firing exactly right, and he is hooked up to an external pacemaker. We were warned this might happen, and most babies’ hearts correct themselves within a few days. If it doesn’t, additional action or a permanent pacemaker would be required. You don’t have to be a brilliant psychometrician to guess what I’m hoping to avoid for Oliver.

2013-09-28 12.37.33

I continue to be amazed at medical science. The recovery process is as interesting as anything I’ve ever watched. The systems in place for managing his pain while monitoring/controlling his heart performance, nutrition, oxygen levels, and blood composition and pressure are mind blowing. And the ICU nurses are the perfect balance of intelligence and compassion. Hospitals still make me anxious, but they are filled with awesome people (at least this one).

Oliver is doing well today, but he is pretty uncomfortable. I’m not sure it’s pain as much as it is lying on his back with tubes and wires all over. My guess is that it reminds him of the car seat with all its restraints. In other words, pure torture. But such is the road to recovery. And this trip will be worth it, I promise.

Self reflection

Right now I’m sitting in a beach house we rented with some friends while the kids are napping. On the drive out here, my wife drove and made me sit in the back to entertain Oliver as punishment for not being home in time to leave at our agreed-upon time. Three hours of making faces and noises at Oliver to keep him happy wasn’t exactly my idea of an awesome trip, but somewhere I squeezed in a few moments of self-reflection.

2013-09-27 18.18.20

I feel like over the past few months I’ve been spending more and more of my time at home thinking about work-related projects I normally save for the office. Granted, work has been busy lately, and I’ve never been one to leave work at work. But I’m spending a disproportionate amount of time thinking about various work problems that need solutions, even for me. In addition, I’ve noticed that even when I do manage to turn off my work brain, I spend my time thinking about the existence of God or researching wise investment opportunities or reading about how pianos work. The point is, I spend less and less time thinking about Oliver and his condition… and it’s kind of on purpose. Perhaps the only time I really force myself to think about Oliver and his upcoming surgery (less than a week away, btw) is when I’m writing this blog.

The other day I told a friend at work that I almost didn’t post the song/poem Oliver and I wrote (see my last post), which is about how I’m looking forward to the surgery being behind us and hoping nothing bad happens in the meantime. I’m not even sure why I said that, but I do know that the main reason I almost didn’t post it is that there are a few reminders to Oliver that he really needs to not “sleep too deep”. I know it’s normal to be worried about worst case scenarios despite also being confident that he’s going to be fine and knowing the chances of something bad happening are very, very small. Still, there’s something embarrassing (or hard to admit at least) about being someone who supposedly trusts in God yet can’t keep bad thoughts about death out of my head whenever I do start thinking about Oliver, which is why I think I’ve been either consciously or subconsciously deciding NOT to think about it and focusing on other things.

Probably some of you who read my last post are thinking, “Andy, that poem isn’t bad… it didn’t come across as depressing or weird or anything.” To that line of thinking I say that’s good to hear, but (1) you didn’t see the first draft, and (2) that poem doesn’t exactly reflect all the thoughts in my head while I was writing. I do have some filters in place (sometimes). And don’t get me wrong, I’m proud of that poem. I like it. But it wasn’t super easy for me to wade through the darker thoughts and just select those words that captured my mindset in a way that I would be glad to share with Oliver someday.

So now as I read this post I realize that for a second time in a row, I have a post I don’t feel that comfortable sharing, for exactly the same reasons! Haha. Maybe my next post will be me explaining my feelings while writing this one. I may have just stumbled upon a way to keep this blog going forever. 🙂

Anyway, as earlier stated, Oliver’s surgery is less than a week away (Oct 3). I probably won’t post anything before then, as I suspect things will get a little busy while we try to get prepared. I’ll make sure to write something afterwards, however, to keep people posted on how things go.

Godspeed, little man.

Short Song – Mornings Rock

The other night Ollie and I put our heads together during one of his 3am wide awake parties. Started jamming. Thought I’d better jot down what we came up with, which was a few verses about how mornings are something to look forward to… it’s not perfect, but if I ever become a famous artist, I guess I’ll fix it then.

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Close your eyelids my son,
But don’t close them too long.
There are so many words to be said.
There are people to kiss
And things I can’t let you miss,
So wake up when the sun peeks its head.

I can’t promise you much
Regarding powers and such,
But one thing I can state as your dad.
I’ll pour my life into yours
With the hope you absorb
All the good, and none of the bad.

You’ve got a few rows to hoe,
Before you’re ready to go.
And the Z’s are a requisite part.
You might be unaware,
But I guess I don’t care…
I’ll use brave to refer to your heart.

With my love at your side
When you let your eyes hide
I hope you feel enveloped throughout.
So please please go to sleep,
But please please not too deep,
And wake up when the bugle rings out.

Close your eyelids my son,
Close them each one by one
And dream of the places to go.
The night won’t be long
And it brings forth the dawn,
We’ll jam again when the sun starts to show.

Below is a picture of a ND sunrise that either my sister, my brother Dan, or my cousin Rory took. I can’t remember for sure. And it might actually be sunset, but whatever, it works, and I like it. 🙂

ND sunrise 2