Our hospital stay with the Glenn was only 6 days! It was so much easier and “better” than the Norwood… as far as the hospital stay and surgery go. But Nolan was pretty miserable. Those headaches are no joke! I’m pretty sure I was fairly close to going crazy and pulling all of my hair out. Nolan was so uncomfortable and Nolan wasn’t getting his pain medications as often as he could and should have. There was one day in the hospital that I was in tears because there was nothing I could do to help him and I was running on very little sleep. Luckily, Cook has some awesome volunteers that came and sat with him while I went downstairs and took a quick break. My mom also came up and let me sleep. I was just so ready to be home because I figured everyone, including Nolan, would be more relaxed. I also thought maybe being home would help Nolan feel better.
We were discharged Wednesday, May 25th. I was ready to be home and I was excited because we’d be able to go to my brother’s high school graduation. One of the nurse practitioners was a little hesitant to let us go home because she didn’t think I could handle it. I was warned about this lady… Luckily, the doctor saw no reason why we should stay any longer and we were home by 1 pm.
Nolan did okay. You could tell he was definitely in pain but it seemed it was only bad at night so we weren’t giving him Tylenol that often. Then came Friday… I was able to see my brother graduate but then I had to tend to the screaming little boy. He screamed for 3 hours and there was nothing we could do. We tried Tylenol, Motrin, and Benadryl and he still wouldn’t calm down. It was MISERABLE! After 3 hours and a call to the doctor he finally calmed down and fell asleep.
We didn’t have any more days like that but there were definitely challenges. Nolan didn’t want to take any of his medicines and he was just so unhappy. I was certain the surgery ruined him and I would never see him smile again. We were alternating Tylenol and Benadryl every 3 hours just to keep him somewhat comfortable. I went on Facebook to some of the support groups I was in and asked when the Glenn kiddos got better. I even asked our friends over at Team Rhett if it was really going to ever get better. Amanda assured me that it would get better and for the time being just give medicine. It wouldn’t hurt him and he wouldn’t become addicted. 🙂
Slowly, we were able to back off the medicine. He still wasn’t completely himself, but he definitely wasn’t AS uncomfortable. He started sleeping better and having more happy periods during the day. Then, on Thursday, June 9, exactly 3 weeks after his surgery, it seemed like everything changed. He seemed to be happy again. He was taking naps again. He was sleeping at night. He wasn’t spitting his medicine back at me.
It is such a relief to have my sweet boy back!
Monday he “celebrated” 5 months of being here! He had a cardiologist appointment and it went great. He has no fluid in his lungs so we are able to stop the Lasix. They said everything looked good and his sats were 92%. Typically after the Glenn they’ll be high 80s, but Dr. Tam left his shunt in so his sats will be higher. We also got the “all clear” to travel. We just always need to know where the nearest children’s hospital is. Our first trip will be in October when we go visit Tante (aunt) at school. We were also told that his next surgery won’t be until the Summer after his 3rd birthday. We have TIME!
I also got a cute video of him squealing today. Isn’t he the cutest? 🙂
Our next challenge: Starting school in August. I’m not sure I’m ready to separate.