Free at last

Oliver was released this afternoon for good behavior. ūüôā¬† His recovery went well¬†(technically still going, I guess). After sharting on Saturday, he was able to start eating formula and had a nice diaper blowout on Sunday. Today, he was doing so well that they decided to let him finish his recovery from home. Today¬†Oliver acted¬†extremely happy when he was presented with a few small bits of food for the first time in days.¬†It made sense… eating is one of his favourite things to do,¬†just like dad.



Oliver Update – 2013-03-22

Oliver’s surgery was Thursday morning, it’s now Saturday, and his recovery is¬†going really well. He is slowly starting to feel better (we can tell because he’s starting to flirt with the nurses again), there is no sign of infection of any kind,¬†his NG tube¬†has been¬†removed,¬†and most importantly, today he let out a couple of loud,¬†greasy toots, an indication that his intestinal system is starting to kick back into gear. It’s¬†a funny thing to celebrate a good shart, but¬†it’s probably something we should all do a little more often.¬†ūüôā

I expect we’ll be here in the hospital a few more days. He’s been on IV fluids and¬†hasn’t started eating yet, and once we are given the green light to start feeding him,¬†they will want to monitor how¬†his system responds for a couple of days.

Back in the saddle

Remember when I used to write in this blog? I barely do. I feel like his heart surgery was a long time ago, but it’s never actually¬†all that far away. More on that later.

Oliver’s takedown surgery (i.e., the surgery to reconnect his bowels)¬†is scheduled for 7:30 am tomorrow (Mar 20). We had to check him into the hospital this afternoon so they could prepare him for tomorrow’s event. He had an enema to make sure the section of bowel that is tied off internally is in good health. He also had an NG tube put in so that they could clean out his system, and they are now feeding him through an IV.

Nothing about today was deeply traumatic by any means. But like any 10-month old, Ollie hated being strapped to a board with his hands above his head and enemized (not a word, but it should be) against his will. And of course he was angry about how many pokes it took the nurses to get his IV in the right place. And he really detested that damn NG tube. It took several sessions to get that thing inserted correctly, and the nurses responsible for this particular line of torture went from being objects of flirtation to recipients of death stares.

The worst part for me personally was being reminded of how unenjoyable it is watching helplessly while a child¬†is put through painful and uncomfortable things he doesn’t understand. When I purposely try to reflect on it, October seems like a long time ago, and my memories of that time period are already starting to get a little foggy.¬†But on days like today, some of those memories and feelings¬†come back quickly and pretty vividly (and maybe even inaccurately; memories are funny things). I’m sure I’m not the first¬†or only one who’s experienced this phenomenon.

On a positive note,¬†I am¬†happy that this surgery should be much simpler and more straightforward than his October surgeries. I hope, anyway. I see that on May 29, 2013 (less than a month after Oliver was born) I wrote, “I look forward to being on the other side of this uncertain period, and I can only hope that the road between here and there is not too difficult.” I couldn’t have foreseen exactly how things would shake out, and a few things ended up being more difficult and more drawn out than I would have liked, but¬†I still stand by that statement, and I still have the same hopes going forward.

Here is a picture of Ollie from a few mornings ago. I hope he gives me this same smile tomorrow morning before his surgery. And the morning after that.

2014-03-16 07.10.35

Hello again…

Some of you probably noticed that¬†I took a little break from writing in this blog.¬†Officially,¬†it’s been¬†just over two months ago since my last post.¬†I feel a little guilty about that.¬†I don’t¬†feel entirely¬†obligated to share my feelings, and I don’t feel too bad about failing to document¬†events from the¬†past 2 months, but I do know¬†that several people visit this blog to stay current on Oliver’s condition, and 2 months is a long time for no news. For that I apologize, and hopefully this email can get everyone back up to speed.¬†Here goes…

Oliver is doing really well now. As visual proof, here is a short video of Oliver giggling over Christmas break:

But Oliver wasn’t always so happy. My last post (Nov 2, 2013) was to notify everyone that Oliver had been released from the hospital.¬†It was indeed¬†a positive step, but at that time he still had an NG tube in his nose for feeding and an ostomy bag for his disconnected bowels.¬†In addition, several of his wounds from infiltrated or infected IV’s required dressing, and¬†he was also going through fairly significant levels of withdrawal from his pain medication (or¬†at least¬†that’s how I interpreted his condition as a¬†sweaty, cranky¬†little hot mess for about¬†3-4 weeks after coming home).¬†Later we would find out that he was also teething, just for a little added pleasure. In short, Oliver was high maintenance.

To give credit where it is due, it has been Shawna who dealt with all of this head on. Shawna transformed into a wound and ostomy nurse. She figured out how to¬†replace his NG tube, including listening¬†through a stethoscope for a popping sound¬†to ensure the tube was properly located in his stomach (and not in his lungs) for those times that he managed to¬†rip that awful thing out with his own hands. I’m not saying¬†I was absent (I did other things to help, I think), but¬†all of us are very lucky for Shawna’s mostly self-obtained expertise in caring for Oliver.¬†I have a newfound respect for the many¬†parents/caregivers who are forced to¬†do things that hurt their children knowing the little ones don’t understand that these things are for their own good.¬†It’s not easy, and Shawna seemed to find the perfect mix of compassion and¬†efficiency, although¬†like any great mom,¬†compassion always trumped efficiency if the¬†two were ever at odds.

Currently, Oliver is doing really well and seems to have returned to his normal self, but technically he is still on the road to recovery. On the positive side, his wounds have healed, his NG tube is gone, his appetite has returned, and he is off all medications. Most importantly, his heart is functioning properly and seems to be healed, for the most part. His pulmonary valve is still a bit leaky, but there is a strong chance it will never affect him. That alone is a HUGE relief.

On the negative side, he’s¬†not the best sleeper in the world.¬†I like to blame Oliver’s trials and tribulations for that, but my parents insist that I deserve to have a baby who dislikes sleeping (and, more¬†generally, any situation in which he is¬†not being held). If sleeping poorly is¬†a genetic trait, however, then doesn’t the blame for that point right back to my parents? Yup. Boom.

On the serious side, he will have¬†his ostomy bag until his bowel reconnection surgery, likely to be scheduled for either February or March. Originally, the doctors indicated he might be able to have this surgery before Christmas, but as I described earlier, he wasn’t doing so hot at that time and he wasn’t gaining¬†weight, so they decided to postpone the surgery, to my relief.¬†Nobody wants to care for an ileostomy for an extra couple months,¬†but¬†I’d take that over a premature abdominal surgery any day.

Plus, Shawna’s the resident ostomy expert. Not learning ostomy care has turned out to¬†be a wise move on my part, much like never learning how to clean bathrooms. ūüôā

Here’s a couple pictures of Oliver and Clara with their great grandparents.¬†Pretty special.

2013-12-23 10.52.15

2013-12-23 10.56.34

Oliver Update 2013-11-02 – Released

I’ve been bad about writing this past week, and I apologize. I know my mom has been keeping some friends and family members updated through email. If you’re not part of my mom’s distribution list, feel free to contact her to ask her why she doesn’t love you.

The good news today is that Ollie is finally coming home (day 30 post surgery). There had been discussion this week that perhaps he should have the surgery to reconnect his bowels later this week, but the doctors decided that to wait a while would be best. His (hopefully) last surgery will likely happen sometime in early December. He hasn’t mastered eating yet, so he still has an NG tube for feedings and pain meds. He’s being weaned off the pain meds, and he’s been going through some rough patches of withdrawal, but for the most part, he’s been pretty happy and he seems to be the Oliver we knew before the surgery.

Excited to get him home. Excited not to be in the hospital anymore. Here’s a couple pics of him over the past couple days.



Oliver Update 2013-10-23

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.

2013-10-17 07.35.24

Oliver Update 2013-10-20

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.