Nolan was doing well in progressive care, but due to him being intubated for so long, he had pretty much lost his sucking reflex and bottle-feeding was out of the question. Speech therapists would come in from time to time to work on it, but he was getting all of his feeds via an NG Tube, which went into his nose and down to his stomach. Nolan hated that thing: he would always try to pull it out, and when he would pull it out even an inch, he’d barf everywhere. Nasty. And he was a major league ninja about it too, you’d unswaddle him to change his diaper and BAM, that little hand would whip up and grab it.
According to the staff, they wanted him to take 75% of his feeds by mouth before not considering a feeding tube any longer. Unfortunately that wasn’t going to happen. I happened to be in the room one afternoon with Nolan, on a weekend, when a GI doctor came in to chat with me about what would happen with Nolan’s feeds. He talked about something called a Gastronomy Tube, or G-Tube, which would have to be surgically placed. Oh great, another surgery. He assured me that this would be a safe procedure. I know the surgeons said that losing the suck reflex is common after the Norwood Procedure, but I really didn’t think it would go this far. Basically they’d have to go down his throat and then put a tube through his skin directly to his stomach. A tube would be sticking out, which we would use for feeds and medications. It was pretty sad to see Nolan go for another procedure…but I was hoping that he’d get this done the first shot.
When Nolan came back, he was asleep and had the tube sticking out. It was held in place with this round disc, and it looked huge on him. I felt bad for my little guy…he’d been through so much. I was told that he would be in a little pain once the pain meds wore off but that he was scheduled for some tylenol for pain. And you could tell once the pain meds wore off because he was CRANKY. I tried my best to console him: talking to him, singing to him, consoling him, playing him music. Nothing worked. Then it was time for the physician on duty to do their rounds. And just WHOOOO was on duty this day? Doctor freakin’ Doom. If you remember from an post early on in this blog, “Dr. Doom” is the doctor who confirmed that Nolan had HLHS and she did it in a completely cold, soul-less manner. I REALLY didn’t like this doctor and there the doctor was on duty while my son writhed in misery. GREAT. The doc got an update from the nurse before walking to give him a look-over. I had my guard up, like I was ready to go to war. She turned to me and asked if I had any questions and I said, “I just feel like he’s miserable and in a lot of pain and he’s been like that for awhile.” She looked at Nolan again, then turned to his nurse and asked about meds. The nurse said he was scheduled for Tylenol a little later and Dr. Doom replied, in utterly mind-blowing fashion, “Well I can’t see why he can’t have some now. He’s obviously in pain.” Then she touched Nolan’s foot and said “Feel better, Nolan, you look great.” And then walked out. And Nolan got his meds.
What the what? I was stunned. This person who I so reviled for being terrible to us just did something nice for my son. Don’t get me wrong, it wasn’t super warm or friendly, but it was the right thing to do and she did it without thinking twice. I was shocked. So did she redeem herself? Not sure. Sometimes I acted stank about her around other people, but sometimes I didn’t say anything at all. It was an interesting introduction to the subject of forgiving someone…it planted the seed in my mind.
As I mentioned in a previous post, I did NOT have a good first experience with our initial cardiologist. So I was absolutely thrilled when she was unavailable and we had to see a different doctor for our second cardiology visit. The first thing he did was sit down and go over everything about Hypoplastic Left Heart Syndrome from the beginning…in simple terms. He said that Nolan’s heart was structured differently (what’s called a Double-Outlet Right Ventricle), which would be helpful for him. I was shocked, we never heard that in our first meeting with Dr. Doom (imagine that). He also said these words: “We have some of the best surgeons you’ll find for this…we know how to treat it, and we’re successful at it.” WHOA. What a turnaround! We went from Welcome to Depressionville, Population YOU….to HOPE! It was like suddenly we had a breath of fresh air, and I immediately felt more uplifted.
He had us do another fetal echo, and he came in the room multiple times to guide the tech towards things he wanted to see specifically. Afterward he met with us again to confirm everything and talk a little bit about future appointments. Then he personally walked us to check-out so we could make an appointment to meet with the surgeon who would be doing Nolan’s surgeries. Wow…that’s service. You know, I can’t say enough how much it meant to have a fresh view on things at this stage in our journey. The first doctor made it seem hopeless, the next doctor made us feel like they knew exactly what to do. And when your world has become so fragile, that’s big.
So I encourage you, find the doctor you like. Find someone who speaks at your level, not down to you. Chances are, wherever you are, there will be a few cardiologists available: try them all if you want. Seriously. You will be seeing this person A LOT. If they give you crap, you’re going to have to deal with their crap for a LONG time. So make it worthwhile for everyone. I encourage you to seek out other heart parents in your area and flat-out ask them who they like and why…I promise you they’ll be happy to tell you. It’s YOUR responsibility to ensure the best care for your kids…so do the legwork now.