Oliver was released this afternoon for good behavior. 🙂 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’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. 🙂
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.
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. 🙂
Here’s a couple pictures of Oliver and Clara with their great grandparents. Pretty special.
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.
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.
I wanted to give everyone a quick update. I meant to put this up last week, but time got away from me.
We met with Oliver’s surgeon last week, and for the most part the conversation went really well. I only say “for the most part” because some of the things were a little tough to hear. He explained the actual surgical procedure and described the typical recovery period. Listening to him talk about surgery was informative, but a little difficult to listen to. I will say that modern medical science is absolutely mind-blowing. I was truly amazed listening to him talk about everything that they do and monitor during infant heart surgery.
He also talked about the risks of surgery, which was the hardest. The surgeon was very professional, and surprisingly comforting and reassuring. Regardless, anytime you’re discussing worst-case scenarios involving your son’s heart surgery, it’s a little tough to swallow (literally).
The good news is that the surgeon painted a slightly happier picture of Oliver’s recovery than had been painted by previous doctors. He made it sound like Oliver would be back to 100% within 6 weeks, but would likely be almost back to normal much earlier than that. He also indicated that any complications that might arise would show themselves within the first few days.
There were many specifics discussed that I won’t get into here, for example, the likelihood that Oliver will require additional surgeries later in life. The prognosis is very good, meaning he’s got a strong chance of only needing this one surgery, but the situation is a little too complex for me to write it out in this blog. Anyway, things haven’t really changed since May… I’m still concerned and dreading Oct 3rd, but I can’t wait for November.
October 3rd is the official surgery date. We knew it was coming. We had been thinking it would be November, but when it happens doesn’t really matter to us. He’s big and strong enough to handle it (so they say), there’s not really any reason to wait longer, and they’d like to perform the procedure before the cold and flu season hits, as that can complicate infant surgeries. So the countdown begins.
Shawna and I are looking forward to being on the other side of the surgery, but it’s hard not to be pretty anxious about it. Oliver continues to do really well, which is a blessing because it gives me the feeling that everything else will also go well, even if that’s not perfect logic. It’s certainly not a bad sign, though, and it makes our lives easier.
Developmentally, he just started to stick out his tongue (we think in response to us sticking tongues out at him, but it’s hard to prove). Sticking his tongue out is, however, hard evidence he’s a Dwyer. All of the males in my family (and maybe my sister) chew our tongues and stick them out when we are thinking hard or working on something that requires a little focus. I actually thought I’d stopped, but I just made a video of myself making some waffles with my daughter, and my tongue was featured prominently every time I began measuring ingredients.
He’s sticking out his tongue for the camera in the above pic, but unfortunately, you can’t see his super spiky hair. You’ll have to trust me when I say he gets a lot of attention from the ladies over that hair. 🙂