*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.
Since my last post, Sunley has moved to the CVICU on floor 15! Basically what that means for her is that she has officially survived her surgery, and now we are waiting to see just how well the surgery worked. Her nasal cannula and feeding tube are both GONE! She has been eating and taking meds by mouth. She has an IV in her arm, but it isn’t currently being used. So besides the leads on her torso and pulse ox on her foot, she is wire free, and we can see her WHOLE face. It’s so wonderful to see. She is eating like a champ, and for the last 2 days the doctors have let her eat as much as she asks for without limits.
Yesterday morning, Sunley had a chest Xray that was a little concerning. It showed too much blood flow to her lungs. She also has had a few times where her respirations have been too fast, and she has also had some very low saturations which have us all a little worried. After much debate, the cardiology team and we decided to let her continue eating as she was through today, and give her body a chance to resolve the issue itself. We should know today sometime with an X-ray if that is working. If not, we will go back on some more diuretics that we had weaned off. If that doesn’t work, we may be in a pickle — Usually, the next step would be to restrict feeds. But Sunley is SO behind on her weight, and weight gain is a major priority for her to even be a candidate for the Glenn procedure (which she needs to survive). Not sure what we would do if the diuretics didn’t work, because you also don’t want to stress out her lungs so much that THEY disqualify her for the Glenn. But hopefully we won’t get there.
I can’t believe it’s only been 11 days since her surgery. There are lots of people who have been in the CVICU for months and months, so I can’t complain — I can’t wait to take her home, but I’m also very, VERY nervous about it. It’s so hard to know that we will soon be coming back to do it all over again. And next time, she has a much more invasive surgery planned. Our hope is that her lungs continue to heal, and we can wait several months before the Glenn. Being an older Glenn patient slightly reduces some very scary risks. The doctors have told us that they hope to send us home sometime next week with no monitoring equipment and no medication. I’m not sure we will get to do the no medication part, but it all sounds encouraging! No monitors sounds a bit scary to me, but I won’t miss all the alarms throughout the night. I’m pretty sick of waking up my baby while attempting to reattach her pulse ox! Right now, the only monitors she has are heart rate/rhythm, oxygen saturation, and blood pressure, and the only one thats raised concerns is her oxygen saturation, which randomly dips down form time to time. No one is really sure why, and unfortunately the extra blood flow to her lungs could mean that it will lower again. Right now, she ranges from the 60s to the low 80s — most of the time, she’s around 74. Pre-surgery, doctors said they hoped for mid 80s, then last week, they said she needed to be 75 minimum, and now they’ve said that as long as she’s in the 70s, it’s ok. That’s very hard for me to get on board with, because I’m still not over that we didn’t get to our mid 80s goal. But the fact is, we can’t change it. The surgeon technically could go back in and readjust her PA band, but the risk far outweighs the benefit in this case. Right now, it’s looking like she could be on the early side of receiving her Glenn, but we are all hoping her body decides to readjust some more and find a more stable normal.
Derek and I have been switching off evenings at home with the kids, and my Aunt Missy has kept them during the day (which makes her a SAINT). We try very hard to compartmentalize — when we are at the hospital, our whole focus is on Sunley, and at home we try not to talk about the hospital stuff much and just focus on our big 2 kiddos. But of course, it’s very draining and obviously pretty hard on all 3 of the kids. It’s possible that we alone are responsible for Uber’s current success —we use it multiple times a day because parking here is just very expensive. We’ve gotten LOTS of food from ladies at church and those have fed my kids and aunt for a LOT of meals, and me too when I’ve been home. We are daily blown away by the amount of prayers going up for Sunley. If you’re not already, please consider officially becoming an organ donor — there are SO many babies and older kids here waiting for transplants, and it just may be Sunley someday. It’s so hard to see knowing that so many decent organs end up being buried because someone just didn’t get around to making their organ donation wishes official. And in case I’m sounding too preachy, I didn’t get around to it either until I was told my daughter MIGHT need some new organs someday (Yes, unfortunately that’s plural — but hopefully will never happen).
As much as I miss home and our old routine, the hospital is actually pretty great. The rooms are pretty comfortable, Ronald McDonald has rooms for when you don’t have a sleep-in room, and most of all, you’re in this bubble of families all going through hard stuff. There aren’t any judgmental looks toward bald-headed little girls or moms crying on the elevator. Getting around in a wheelchair or lugging around an oxygen tank is perfectly normal. All of us had that gut-wrenching diagnosis moment — we all seem to have a phrase from that day that will always haunt us — but we all survived. It’s kind of a nice support group of people whose lives are on pause. Of course we all have the goal of LEAVING, but honestly it’s going to be very hard to leave every time she is discharged. We've also made some pretty strong bonds with some other families here -- one in particular -- and it will be very hard not seeing them every day when the time comes. I won't go into all of their details (because I did not ask permission to share any of it), but we have been so blessed to meet them, and I have no doubt we will be friends forever. We've already gotten our older kids together, and it's been so SO wonderful to be able to spend time together and laugh so hard that we forget for a minute where we are and why we're here.
I’ll post an update to this post below when we get the results back from her X-ray today. Pray for good news!
UPDATE: X-ray showed that she is still continuing to have too much fluid in her lungs. She is now maxed out on diuretics and still allowed to eat as much as she wants. We are praying the drugs do their job, and she continues to gain weight!