3 Weeks Ago Post Open Heart Surgery

William’s surgery was three weeks ago today and I still find myself sometimes feeling like the surgery was just a nightmare. William’s recovery is going really well and all his doctor’s appointments have gone just as well. Sitting here and thinking back on the last three weeks I cannot help but feel blessed. We have had a lot of love and support to help us through this. I feel very fortunate to be able to stay with William during his recovery. While his sternum heals it is so important that he is lifted properly and that there is no rough play. Each day it is getting harder and harder to hold him back because he just wants to go. This morning when he got dressed I could see how well his incision is healing and I am just amazed by how strong he is.

William has been having few nightmares which is one of the things to expect when your child has gone through something traumatic. The one day when he woke up from his nap he was screaming and crying, “My arm! It hurts, it really hurts.” We said where William, point to where it hurts. He said “Where the needles are, take them out, it hurts!” We needed to just reassure him there were no needles and he is okay. After roughly five minutes he calmed down. Other times he just wakes up saying he is in pain or starving. William is no longer on any pain medication. Yesterday was the first day without any Advil. We have been doing a lot of different activities then we usually do which is a lot of fun. William has a new love for Hot Wheels and planes. We have been doing crafts, painting and sledding down the hill together. We bake and read a lot of stories. The quality time together has been wonderful.

Carly is back to herself more each day. The toll this all took on her was more then we thought it would be. We had arranged for my mom to stay with her while we were at the hospital which was a huge help and allowed us to make time for her each day. She has also had to process this all in her own way. She has been acting out and more upset until recently. She also has been having some separation anxiety; she went for a play date and after less then an hour she was upset and wanted me to come get her. When we talked about it she said she was worried I wouldn’t come ever. This made me realize that we needed to spend more time talking to her about how she is feeling. When we did this she then opened up and told us how hard it was not knowing how William was doing, when she would see us and then only seeing us for awhile. She also said that it is hard to not be able to do all the things we did as a family before. This conversation helped us to gain more understanding and support her more. We reassured that we we will do all those things like swimming together very soon and that there are many things that we can do that are fun. We have had movie nights, games nights, painting nights and dance parties. William asked me when we were dancing if his heart can dance and I said yes it can sweetheart. He said, “Great because I love to dance.”

As time goes on we will distance ourselves from the surgery with only scars as a reminder. It has gone better then we could have ever hoped and I wish the same for other families who have to go through something similar. William has another follow-up appointment in roughly four weeks and then he should hopefully get the green light to play mini sticks, skate and swim. That will further bring normality to our family.

In closing I wanted to share a video of William singing “O Canada”. This is what he sang while he was wheeled on the stretcher with me into the surgery room three weeks ago today. He sang it until the needle went in and then he cried until he was asleep in my arms. Leaving that room was one of the hardest things to do but seeing him today it was all worth it because now he is going to be even stronger!

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