*For anyone who needs a recap, our little Sunley Summit has Hypoplastic Right Heart Syndrome (HRHS). Specifically, she has Double Inlet Left Ventricle (DILV) with an extremely small (almost non-existent) right ventricle and large VSD. Both the Aorta and the Pulmonary Artery are well developed and going into the left ventricle (as far as we can tell right now). We are getting care at Texas Children’s Hospital in Houston, TX, whose heart center is ranked number one in the nation. There is no real cure for Sunley’s condition, so on June 11, 2018 she had a PA Banding surgery, and will later receive a Glenn, and Fontan (a total of 3 heart surgeries). Our hope is that these surgeries will work well enough to avoid a heart transplant and she will lead a long, full life with only those 3 surgeries. Sunley spent her first 6 days in the NICU, went home for a while, and then spent 26 days in the hospital after her first surgery at 6 weeks old.
Wonderful news: Sunley is scheduled to be discharged first thing in the morning! She has gained 240g since we have been here — that’s half a pound! The first few ounces were I’m sure just a result of getting off of her diuretics, but now we’ve definitely had some real, healthy weight gain. She’s finishing almost all of her bottles, and just obviously feeling better.
I’m so happy that we had Dr. Schlingmann — he’s quickly become one of our favorites that we’ve had at TCH. He was very patient with our very repetitive questions, and never made us feel dumb for asking or questioning anything. I’m SO excited that he seems to have been spot on about her meds, and I had him really go into detail on WHY she can be off of the diuretics. I did not end up asking for an xray, and I feel like I know what to look for at home, should she start needing more attention. I know what tachypnea looks like, and I think I have a pretty good idea of when she’s feeling good and when she’s not.
I specifically requested today that he talk to Dr. Ayres just to make sure we are all on the same page. Sunley has a follow up with Dr. Ayres scheduled for August 30th, and I don’t want her lack of Enalipril, Diuril, and Lasix to be a surprise. I’m also hoping that they can get on the same page to REALLY figure out if being off of Enalipril looks like a long-term thing. For now, I’m just so excited to be going home with only ONE med, which is just a reflux med. For months, we’ve been dealing with the constant med reminders and the stress of always making sure we had them handy if we were out somewhere, and now I get to just remember 1 med, twice a day. In my opinion, Sunley seems to feel better overall without all the meds. I don’t know if those meds could affect this, but she’s been way less constipated since we got here, and it’s so wonderful to see her WANTING her bottle.
I think I’m officially convinced that she doesn’t need the diuretics (finally). It’s just been really hard to let myself get my hopes up. Her normal saturations are now in the 80s, and I didn’t think that was possible! As she grows, we will probably need to tweak at some point, just like we needed to tweak now, but I’m hopeful that the higher sats might mean some more wait time before the Glenn? Not sure if it really works that way (Rats, that would have been a good question during rounds) but I’m hopeful.
I’m very happy with how smoothly this hospital trip went. I just feel like the staff identified and fixed the issue so quickly. I REALLY thought we were going to spend some time after getting her rehydrated figuring out meds, and I’m happy that I seem to be wrong. A TINY part of me is still nervous that we won’t have much med-free time before we get back on some, but I plan on enjoying this as much as I can before that happens. I’m beyond stoked about the 80s saturations! This was our goal post-surgery and we have finally hit it. I plan on doing my best not to worry about the “next thing” and just enjoy my chubby baby for now.
On a less spunky note, I am really missing my big kids today. Glad to know that they are happy and having fun, just miss them. I found this photo of Hadelyn today and it just made me a PUDDLE.