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.