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!

Post Surgery Follow-up

This morning William had his post surgery follow up in Saskatoon at Royal University Hospital. William was a little anxious about this appointment and while we were waiting in playroom with him he kept asking if they were going to hurt him. We reassured him that they weren’t and that they just wanted to check his heart to make sure everything was good after his surgery. We had fun playing while we waited. He loved the cement truck and how tall he looked in the silly mirror.

We then were called by the paediatric cardiology nurse. She took William’s weight and height. William has only lost 2 ounces since surgery and with the way his appetite is coming back I’m sure he will regain that weight back in no time. We then met with Dr. Pharis for William’s general check-up, Echo and ECG. William laid nice and still for his Echo and Dr. Pharis was able to show us where the patch was in William’s heart. The hole in William’s heart was the size of a toonie so there was a large patch in place. The Echo also confirmed the patching was successful and there is no blood going cross chamber like there was prior to surgery. The pulmonary veins were re-routed successfully and there was no fluid around his heart. William’s one chamber of his heart is still enlarged but we should see a decrease in this at his next appointment. The cardiac nurse then removed the sutra stitch below his rib cage where his drainage tube was. William was worried this would hurt but they reassured him it wouldn’t. He was very curious to watch as they removed the stitch and did really well with it. William then had his ECG which confirmed that his heartbeat was regular. Over the next 4-6 weeks our job is to ensure that the sternum is kept safe from injury and that we increase the iron in his diet. William needs to watch how much he lifts, pulls and pushes over this period of time as well as stay away from swimming, skating and rough play. William’s iron levels will be tested at his next appointment to ensure that they are back to normal after the blood loss from surgery. We couldn’t be more happy with his follow-up!

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The First Night in PICU

When William came out of surgery into PICU he was awake which we were not expecting. The nurses asked us to come in to try to calm him down as he was upset. They were trying to get him settled, take his vitals, do an ECG and chest x-ray. It was hard to see him so upset. We were not prepared for this at all because usually when children come out of heart surgery they are still asleep and slowly wake up. William was trying to sit-up and when he would his IV’s and drainage tubes would pull. He would scream a cry we have never heard from him. On top of that some of the medication he was on caused some hallucinations and normally where we would be able to explain and reason with him he did not understand. I actually had to leave the room because I was feeling dizzy and really upset. I’m not good with seeing blood and seeing the drainage tubes and all the IV’s was really overwhelming. I completely broke down in the hallway. I had a nurse who was walking down the hall check in on me. I then phoned a close friend to chat. William had a rough first night.

One of the biggest things that upset him was he couldn’t drink anything until 8pm or eat because he was on a lung bypass machine. Considering that he had been fasting since the night before and he was the second surgery of the day at 12:50 pm this was a tall feat. He just kept saying you guys aren’t listening. I want water up to the top of the lid, I’m thirsty! When we said no food until tomorrow he kept saying you guys are trying to starve me. I’m going to starve. This went on until about 1:30am. I left at around 12:30 because only one of us could stay the night. I just couldn’t handle it anymore. As a mother you never want to see your child upset and in pain. You want to be able to provide them love, comfort, food and water and all the basic things we all need to survive plus more and during this time I couldn’t. I walked back to where we were staying in the sleet snow and actually went the wrong way a few times. I felt lost in so many ways. My heart broke to leave him like that but I just couldn’t do it anymore. I hit a wall and was breaking down and I knew that Regan would be able to be there in a way I couldn’t.

I slept on and off until 4:15am restlessly because I was wondering how William was doing. I had a quick shower and headed back to the hospital. On the way there I felt dizzy again and actually vomited. When I walked in to the PICU William was sleeping peacefully.  The slideshow is pictures from the morning following surgery.

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Going Home!

Today we got the go ahead to travel home tomorrow. It was the best Valentine’s Day gift I could ask for. I am looking forward to being at home as a family and continue to see William recover more each day. Today there were glimpses of his usual goofy self; he kept asking to watch the funniest show. While Carly and William were having a picnic lunch in the living room it felt like the surgery was all just a nightmare. Until William takes his shirt off.

I haven’t been posting too much detail in regards to the surgery and recovery because it’s been such a difficult experience. I plan on posting pictures and details in the weeks to come when I feel I am able. The reason I started this blog was so other parents had a better understanding of this experience. A friend, Emily from afar sent this to me and it resonates with me so I wanted to share.

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Time for Surgery

At 11:30 we went down to get his hospital pyjamas on. As soon as he was dressed he said “I look like a doctor.” The next hour was challenging because he was getting really hungry and thirsty. There were a few moments where I thought he was going to get really upset but we were able to distract him. We managed to distract him and keep him busy which kept his mind off of his stomach. When they came down to get us I rode up to the surgical ward on the bed with him. He said “this is so warm and cozy mommy” as we rode the bed up the elevator. After a short wait they put a gown on me and a surgical cap to which he asked for one too. William and I were then wheeled down the hall into the room that his surgery would be complete in. He was so brave and did so great! Everyone in the operating room thought he was so cute with his glasses and surgical cap. We then sang Oh Canada until they gave him the anesthetic to put him to sleep. He cried a few seconds and fell asleep while I was hugging him. it was hard to say good-bye for now but I was glad I held him until he was asleep. The staff has been so wonderful.

The Beach

We were at the hospital at 10:30am to admit William for his open heart surgery. After he was admitted we got to take him to “The Beach” to play until they needed to prep him for surgery. This really helped to pass the time because he hadn’t eaten since 7:30pm night before and had no fluids after 9:30am. He played with trains and went up and down the halls in a car. I went with him down the hallway while he drove until he said “I’m out of gas time to fill up.” What a great area for kids.