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.

Surgery Day

Today is William’s surgery day. William cannot eat or drink anything after 9:30am so he has been taking advantage of the clear fluids this morning; jello,juice, chicken broth and water. Last night we went to the Olive Garden and William said he was carb-loading because he won’t be able to eat tomorrow.

We will be at the hospital at 10:30am for admitting. His surgery is scheduled for 12:40pm and is expected to last 2-3hrs. When William comes out of surgery he will be in the Pediatric Intensive Care Unit. We have packed lots of books, Ipad and his new favorite painting with water book. Thank-you to everyone for all the love and support!

Surprise for William and Carly

Last night after supper Carly told William we were going for a surprise. Mom said, “Carly wants to see his face light up.” William then said “My face will light up, that’s my surprise?!?”

We took the kids to visit Regan’s friend, Curtis who is a firefighter and the kids got a tour of the fire hall and fire truck. William saw a hockey net and just wanted to play hockey with the firefighters so that’s what he did. When we left he was having a conversation with his puppy (stuffie), “Puppy I just played hockey with firefighters!” Then puppy said “WooHoo!” Then the conversation continued until the hotel with William speaking for puppy. The kids had an amazing time at the fire hall! We are so grateful to Curtis for inviting us there and for the great memories.