We officially have a Glenn baby!
Nolan had his Glenn surgery Thursday, May 19th. It was 4 months and 1 day after his Norwood.
We had pre-op on Wednesday the 18th. My sister went with me because it’s nice to have someone to go with us to these appointments. For pre-ops they like to get blood pressure from all 4 limbs and Nolan HATES having his blood pressure taken. He doesn’t like being squeezed. But when Tante (Aunt Sairra) is holding him he sits still and doesn’t fuss. His oxygen saturations were high 70s which actually surprised me because he had been pretty blue. The anesthesiologist came in to talk to us about how the anesthesia would work and I picked out his flavor: watermelon. They said they do flavors because without it the anesthesia tastes like “beach balls”. We signed our consent forms and I was beginning to think that we were going to get out of there without blood being drawn. Then the nurse came in and said all that was left was to test for MRSA, get a chest x-ray, and draw some blood…. We haven’t had great experiences with the lab techs taking blood so I wasn’t looking forward to this. I actually ended up leaving the room because I HATE seeing Nolan in pain and not being able to do anything. The ladies from lab did a pretty good job this time, however Nolan still had some pretty bad petechiae and was bruised. Then we went down for the x-ray and we were free to go.
Nolan wasn’t allowed to have milk after 4 am and then no more clear liquids after 6 am. He was the first case so obviously they needed an empty stomach. I prayed that Nolan would be taken back quickly and that God would make Nolan feel full so he wouldn’t be so upset. At 5:20 Nolan had his last drink of a mixture of clear Pedialyte and Apple Juice. We gave him a bath and then we had to rush to get everything ready to go. We left the house fairly late but still managed to make it the hospital a couple of minutes early. Unfortunately, in the craziness of the morning we forgot Nolan’s antibiotic that he was supposed to get and his blood bracelet. We really needed the blood bracelet otherwise he would have needed more lab work and I did NOT want to put him through that again. Luckily, my sister is staying with us for the Summer so before she left she grabbed it. We were taken back to a room around 7:15 and at about 9:30 Nolan was taken to the OR. I didn’t cry this time and I was really proud of myself. We were told we’d get a call when surgery started.
Every hour that went by with no phone call was harder and harder. I was beginning to think something was wrong but was also trying to remind myself that “no news is good news”. Finally, after talking with my mom about our concerns and wondering if everything was okay, we got the call. At 12:35 surgery had started and we’d be getting hourly phone calls. I think everyone had a pretty good time waiting. I had made “Glenn Activity Packets” for people to do. We had card games and coloring pages. But I think my favorite thing to do while waiting was my “Glenn Trivia”. The winners got Starbursts. But I also gave everyone else some Swedish Fish. At 2:30 we got a call and were told surgery went well and they were getting ready to close. Nolan didn’t have to be on bypass this time which was a relief because it lowered his risk of stroke. I think around 3:30 I saw one of his nurses and realized they were wheeling him out. Johnny and I went to meet Nolan and give him a quick kiss. He looked good. 🙂 We went back to the waiting room and waited for doctors and nurses to get Nolan set up in his room.
Around 4:15 we got to come back to Nolan’s room and see him. He was still intubated but his chest was closed this time. I told Johnny that it was actually kind of weird NOT seeing his chest open.
For the most part, Nolan had a good day and we figured it wouldn’t be long before he was extubated. His sats were doing great and he was breathing over the machine. We left the hospital around 10:30 to go home and get some rest.
At 12:30 in the morning Johnny’s phone rang… I heard Dr. Lanier’s voice on the other end. Nolan was having some problems so they did an x-ray. He had a lot of blood compressing his right lung so they needed to drain it. They had to insert a second chest tube… I wanted so badly not to cry this time around, but I couldn’t help it. We got another call around 1:50 to tell us that Nolan did great and he was doing much better.
Friday morning we came up and were told that other than needing the chest tube he had a great night. They were hoping to extubate that day. Our nurse, Maddie, was really hoping for it as much as we were! Dr. Davis came by and said that she would feel better waiting because his SVC pressure was so high. So, he did not get extubated but he had a good day! I don’t think anything significant happened. He was in a lot of pain and just couldn’t get comfortable.
Saturday we got here mid morning and were told that Nolan had a pretty good night. He was breathing way over the tube and was on 21% oxygen which is room air. Everyone was pretty confident he was getting extubated. He got a few lines and wires taken out and got one of his chest tubes removed. His sats were sitting in the mid to high 80s. They even occasionally would get into the low 90s! We had some friends come visit him for the first time EVER and he got a stuffed sloth named Sid. I went out to dinner with these friends and my family while Johnny stayed at the hospital. He told me they attempted extubation but Nolan stopped breathing so they would try again later. When I got back to the hospital they tried again, but he dropped his sats and had a “fit”. Dr. Meyers really wanted him extubated so he decided to just go for it. Let me tell you, I think that has been the MOST stressful thing this time around. They got the high flow oxygen ready and the emergency kit ready in the event they needed to reintubate. I said a quick prayer that Nolan would handle it well, continue breathing, and keep his sats up. He’s been off the vent for about 20 minutes now and is still doing great! He’s on 60% oxygen. His sats look good and he’s resting now. I can’t imagine how uncomfortable he is, but hopefully with the tube out he’ll feel a little better.
They’re thinking about taking his central line out tomorrow. If that happens all that would be left is one chest tube, his ART line, catheter, and an IV in his head. (Yeah, this poor guy has an IV in his head. It was the only place they could put one because the IVs in his feet gave out.) I’m hoping I get to hold him soon. I miss his snuggles! I think that’s one of the hardest things about this. I feel like it’s been forever since I’ve held him.
I’m really proud of my little guy. And let me tell you, the Glenn IS much easier! We’ve been through this before, but they also just recover quicker. He’s still a little puffy so we’re working on getting the swelling down. We’re trying to encourage him to recover quickly so he can go cheer his uncle on at graduation.
He’s resting now. Johnny says his heart rate is 115 which means he is in a DEEP sleep. We will probably be heading home soon to get some rest and will be praying for a good night.
I never imagined a year ago when I found out I was pregnant that the first year of my mommy career would be lots of hospital and doctors visits. This has been a crazy ride so far, but after this we have TIME! We won’t have to worry about surgeries for a couple of years and we might get to enjoy “normalcy”. Life is crazy, but life is good.