Do you hear that, dear readers? That’s me letting the weight of the world off my shoulders. Well, the weight of MY world anyway. Arlo’s heart procedure to correct his congenital heart defect (called Patent Ductis Arteriosis) is behind us and there is truly no greater feeling than laying it to rest. It had a few more ups and downs than I anticipated, so I wanted to write down what our last few days have involved. Putting it into words has always been a form of therapy for me.
Pre-Op: The day before his procedure, we made our way to Duke Children’s Hospital for the regular course of tests and measurements customary before any operations. They took his weight and height (18 lbs even – barely any weight gain in the past month!) and measured his head, listened to his heart, etc. Then we met with a nurse practitioner who specializes in anesthesiology who walked us through what to expect. Since Arlo has already had surgery once, I wasn’t feeling much anxiety about that portion of their procedure. Next we met with a nurse from the Cardiac Cath lab who walked us through what to expect. She said that the kind of plug they used depended on the size and shape of the defected valve. She told us it would last about 2 hours. And she reassured me over and over again that they do these procedures everyday and on children smaller than Arlo. This was standard stuff, I told myself.
Surgery Day: Duke Hospital schedules the daily surgeries based on age, so that they youngest patients can go first. It’s so hard not feeding a little baby and I’m grateful that they do it that way. We were told not to give Arlo any solids after midnight. No breast milk after 3am and no clear fluids (water, pedialyte) after 4:30am. I fed him a big dinner the night before, nursed him around 3am and then gave him a bottle of warm water (which he begrudgingly took) at 4:30 when he woke up wanting to nurse again. We were at the hospital by 7:00am and ushered back to a surgical triage area.
We met with the nurses and the anesthesiologists first. It was all standard stuff, reconfirmation of what we’d been told early and then the surgeon came in to talk with us. Up until this point, I had been feeling apprehensive but steady. A colleague of Arlo’s regular cardiologist was scheduled to do the surgery and this was our first time meeting him. As he explained what they planned to do, he told us that there was a reasonable chance that they would not be able to fix Arlo’s defect through a catheterization procedure. “If that happens, we’ll close him up and make plans to fix it by going through his ribcage at a later date.” I suddenly felt like I’d been punched in the stomach. “Wait,” I said “No one ever told me that this might not work.” I said to him. He told me that they had reviewed Arlo’s case and felt he was a good candidate, but that he was much smaller than they preferred to preform this procedure on. “But what about the preemies and newborns that you do this on? If you can do it on them, wouldn’t it work on Arlo too?” He looked at me and said “We rarely do this on very small babies. Only when it is absolutely necessary. This isn’t a common procedure for babies as small as your son.” I felt hot and my head began to spin. Everything I was so calm about started to unravel. “If the device is sticking out into his artery or blocks his blood flow, we’ll have to fix it with a more invasive surgery.” he said. From there, he began to go through the required list of surgery risks. I quietly stood up with Arlo and walked out of the room. I just couldn’t hear anymore. I was fighting off tears with everything I had so I left Brent to hear the worst case scenario details by himself.
I came back a few minutes later and apologized for leaving abruptly. ” I just needed a few minutes.” I said to the surgeon. He smiled, assured me they would provide Arlo with the best care available and told us that the nurses would be in momentarily to take him to the OR. They gave him a little bit of some kind of drug that made him a little loopy, but that would help keep him calm once he was out of our arms and as they prepped him for anesthesia. Once he got a bit glassy eyed, they let us walk with him all the way to the doors of the OR, each of us giving him several more kisses on the head even after we’d handed him over to the anesthesiologist.
During the Procedure: We spent the next hour attempting to eat breakfast (neither of us had much of an appetite) and busying ourselves with reading, calling family, and checking email. We received a call that the exploratory portion of the procedure was complete (they had to measure his blood flow, the size of the valve, etc) and that they were about to begin the actual procedure to insert the plug device. Brent went to the hospital chapel to pray. I sat in a cold storage room with my breast pump so that I could give him a bottle once he awoke. Finally, 2 and half hours after we had said goodbye, we got the call that the plug was in place and we could go back to the surgery triage room. I burst into tears, “Thank you God!” I said outloud in relief.
A nurse met us first to tell us that Arlo had done great and that they were just finishing up. Then about ten minues later, the surgeon came in. He showed us images of Arlo’s heart that showed his new blood flow. Arlo’s PDA defect caused 2/3rds of the blood from every pump of his heart to flow around his lungs instead of his body. What they thought was a moderate PDA turned out to be a very big one. “I’m really happy we fixed this now.” the surgeon said. Then he showed us a real-time playback of the procedure on a computer screen. It was like a 2D xray image of his chest and heart. We could see the catheter moving. He fast forwarded to when they released the device and then we saw how it immediately diverted blood flow to the correct artery. It was AMAZING! Medical technology is truly incredible.
He told us that there had been some slight trauma to the artery in his leg where the catheter had been inserted and that they were continuing to monitor it in the OR, but that we could go to the recovery waiting room and they would call us when he was ready for us to go back.
Post Op: The pediatric recovery rooms are in a different part of the hospital than the cardiac cath lab, so we had to weave our way out of the main hospital and over to the children’s center. My dad and step mom were there waiting for us and we spent the next 45 minutes waiting for them to call our name. I started getting concerned that something was wrong since they told us that he would be in recovery soon after we had left the visit with the surgeon, but finally they called us back.
Arlo had the most wonderful recovery nurse, Erika. She greeted us and assured us he was doing well, but they were having trouble finding the pulse in his legs due to the artery spasms from his surgery. Since they couldn’t feel the pulse in his feet with their hands, they were using a small Doppler instrument to try and locate the “woosh woosh” of blood flow. We prayed over him quietly as she slowly guided the Doppler over his feet, trying to make out the sound of a pulse. Finally, she located one on both the top and side of each foot and marked the spots with a X so that they could locate it easily the next time.
He spent 2 hours in recovery, with his vitals being monitored by machines and Erika listening to his heart and his pulse points every 15 minutes. He cried some and we had to hold him on his back with his leg completely straight. Eventually, he took a small bottle of glucose water and then a full 6 ounce bottle of breastmilk. I was so happy to see him eating!
Eventually, we were moved to a private room where I had to request a bed instead of a crib. “He sleeps in our bed at home, if we’re trying to keep him comfortable, he’s going to need to be right next to me.”
Arlo’s recovery required a full SIX hours to be spent on his back. Luckily, the anesthesia made him sleep through most of the first 3, but the fourth hour became more challenging as he started to wake up and wanted to move around. We had to keep the leg where his artery had been punctured really straight and he was not happy about it. We used toys, cartoons, nursing, and chewing on the glowing red oxygen meter taped to his thumb to keep him entertained.
By hour 5, I was given the go ahead to hold him – as long as I kept him on his back. He was much happier with this arrangement and stayed in my arms until the 6th hour had finally passed since he’d been wheeled from the OR. A staff pediatrician stopped in to check his incision and removed his pressure bandages.I couldn’t believe how small the wounds were! They replaced all of the gauze and packing with a small 2inch square bandage.
Arlo received 3 doses of antibiotics over the course of the next 23 hours and really hated having an IV in his hand and foot (there was a time during surgery when they thought he was going to require a dose of Heperin blood thinner in recovery so they put a second line in his foot) He kept grabbing at the tubes and trying to chew on them. I asked the night nurse how they kept children from getting tangled up in the lines and she said they just had to constantly unwrap them. I didn’t like that answer because I worried he’d get the tubes wrapped around his neck while we slept. She eventually agreed to unhook him until he needed his next dose of antibiotic.
By that evening, Arlo was in great spirits. His Papa Allen had driven up to see him and with the approval of the nurses on staff, we bypassed the “clear liquids” meal they had delivered to our room for some mac-n-cheese from the cafeteria downstairs.
When Arlo’s usual bedtime rolled around (7:30pm), he showed no interest in sleeping, so we just kept playing but by 9pm, I was eager for him to get some rest. We walked the halls of the children’s ward – saying hello to friendly nurses and reading stories of children who had had heart transplants while in the care of the same team caring for Arlo. Seeing the smiling, happy faces of children who had overcome much more significant health issues put so much in perspective for me. There were some rooms on the floor that wer obviously those of patients who had been there for a long time.
It had felt like such an ordeal to go through this and be there for only one night, and I can’t imagine the strength of both the children and the families who have serious health problems and require long hospital stays. Friday morning, Arlo had one last echocardiogram to ensure his implant was where it should be, and we spoke with the cardiologist who did his procedure one last time. Arlo’s procedure, start to finish, was best case scenario. We left the hospital with much lighter spirits and a little boy whose heart was pumping just as it should!
Going Home: Since Thursday, we’ve noticed an immediate difference in Arlo’s energy levels. His breathing is regulated. He seems to just FEEL so good and a rash he has had on his skin for months seems to be clearing up. When you think of how hard his heart was working before and how much more blood his body is getting these days, it’s no wonder he’s feeling so fantastic!
To those of you who sent prayers, good vibes, kind words and encouragement for our family throughout this experience, I can’t put into words how much it has meant to us. I was so comforted by the knowledge that friends all over the world were lifting our baby boy up. God has answered our greatest prayers and we are looking forward to a healthy path forward for our sweet Arlo.