7 Week Post Surgery-Great News!

I woke up feeling anxious about William’s follow-up appointment today with little sleep last night. William has been recovering so well but today we would hear from the pediatric cardiologist at Royal University Hospital just how well.

William’s appointment would include the same tests as his other follow-ups. Height, weight and blood pressure were taken. We then were taken to a room for his Echo-cardiogram and ECG. We were able to see the patch on his heart and were told that soon the heart muscle will grow over the patch and we will not see it. William did just as great as he usually does except when they wanted to take the electrodes (stickers) off. He started crying before the nurse/tech even tried. She then told William it wouldn’t hurt if he blew really hard. She said, ” Blow so hard my bangs blow back, way back.” William did just that and was fine for all of them to be removed. We then waited for the pediatric cardiologist to come and review the echo and ECG with us.

When the pediatric cardiologist came in he checked over the pictures from the echo, listened to William’s pulse, heartbeat and checked his incision. Then we got the news that we were hoping for. William’s heart is coping very well from the surgery. His enlarged heart chamber is going back to it’s original size and the patching of the toonie size in his heart was successful. His pulmonary veins were re-routed with no concerns. He will need blood work to check his iron level in two weeks with his family physician but otherwise he is doing great.  William has gained 2.5 pounds in 6 weeks and definitely has more energy. We don’t need to take him for another follow-up for 9 months!!!

We then asked if we could give him his mini-sticks back for hockey and take him swimming. He has missed both of those so much. When the cardiologist said yes, it was like music to my ears and I held back tears of joy. I can’t wait to see his face when we give him his mini-sticks and hockey nets back or when we take him swimming for the first time since his open heart surgery. This has definitely been one of the best days of my life!

Above shows the image of  the echo (center white line going diagonally is William’s patch (under what looks like a white triangle)

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Conversations with William

William has always been our little comedian. For being just three years old he understands humor so well.  He is always so much fun to have a conversation with. He knows if you are joking around or being serious and he is always saying the funniest things. I wanted to share some of our conversations during his recovery time.

I asked William where he was going and he said,”Mom I’m going to go for a scooter ride and get you beer, snacks and a pillow so you can relax.”

William licked one of his tears after he fell up a couple of stairs onto his chest.  He said,”My heart was hurt in the fall but not too badly.”  I then asked him what his tear tasted like to distract him from the pain. He said, “Food” and smiled.

William said, ” Mom my shirt is all wet and so is my tummy.” “Can we make a plastic making machine?” I asked him why. “Well mom, if I had a plastic making machine I can cover myself with plastic so I don’t get wet.” I then said,” William how do you make a plastic making machine.” “It’s easy mom, you take snow, tree branches and water.”

I still remember the nurse at the Stollery Children’s Hospital asking William if we had a dog. William said, “We did until it ran under the truck, then we threw dirt on it.” The nurse didn’t understand at first that Luna, our dog had passed away. William asked for me to dig her up for a long time after she had passed so he could play with her.

I have always really enjoyed my conversations with William. He is so smart and inquisitive. I find myself trying to take more time each day to enjoy moments like these. These conversations have become such wonderful memories for me. I am often reminded like I was again today how blessed we are with how well William’s surgery went and also how well his recovery is going. I know not to take for granted our time together because as I was was reminded of today by someone; not even thirty to forty years ago we would have lost William at some point and not known why.  His heart and lungs would have eventually given up ftom the hole in his heart and pulmonary veins pumping to the wrong chamber of his heart. William’s heart condition was repaired and I am grateful I live during a time where heart conditions like these can be detected and repaired. Life is unpredictable, always remember to enjoy every day and cherish moments like these.

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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!