Leo rocking his awesome mesh muscle shirt that the “holter monitor nurse” gave him.
Sorry for the lack of updates since being home. At the end of the day we’ve been pretty wiped out. I would say Leo is pretty much back to his old self again, but he’s not really. He’s back to sitting up and playing again, but he’s become super clingy and cries throughout the day, sometimes even when I’m holding him. Poor little man! We weren’t sure at first if it was due to pain, hunger, or heart failure. Irritability is a sign of heart failure, and along with his sweatiness and sleepiness we were beginning to wonder if something was wrong.
“…God has not given us a spirit of fear and timidity…”
2 Timothy 1:7
On Thursday, a week after we were discharged, we headed back to Sick Kids for Leo’s post-op clinic. He had a chest X-ray, ECG, echo, and pacemaker clinic. They also put a holter monitor on him before we left for the day (we mailed it back after 24 hours). The x-ray and echo showed that the heart was functioning alright, so that took away our fears of their being heart failure! *phew* They said Leo has lost more weight, but I wasn’t surprised as he’s on a fat-free diet and was on lasix. He currently weighs around 8.4 kg or 18.5 lbs).
Our unhappy little boy not wanting us to take his holter monitor off.
At the pacemaker clinic they told us that when they lowered the pacemaker, that his heart is beating around 70bpm (without the pacemaker), whereas it originally was in the 50s. I had asked her if complete heart block would ever go away, and she said that she doesn’t tell people “no” anymore, as Sick Kids is researching how to grow pacing cells from stem cells (not sure whether it’s from embryos or not). That’s pretty amazing to think that some day Leo wouldn’t need a pacemaker, but for now we’ll be visiting the pacemaker clinic every 6 months. It was a 12 hour day and Leo went to bed without a peep that night.
Since then… Leo still is afraid of being put on his back and sometimes wakes up crying and screaming from naps. He is beginning to play by himself on the floor for about 10 minutes at a time which is a huge improvement. I was talking with other moms of cardiac kids who have shared how their kids have had PTSD (post traumatic stress disorder) symptoms or anxiety issues for months after surgery, and I think that may be what Leo is struggling with. So please keep praying for Leo as his sternum heals and he recovers emotionally!
Enjoying a messy and tasty snack after getting the holter removed.
As for me, I’ve never had to live so selflessly before. Some days are exhausting and I feel so discouraged and disappointed as I didn’t get what I wanted done that day or how I reacted to Leo’s constant fussiness. I’m again reminded how the only way to get through each day is through relying on the Holy Spirit for strength, patience, and grace.
“As for God, His way is perfect; The word of the Lord is proven; He is a shield to all who trust in Him. ‘For who is God, except the Lord? And who is a rock, except our God? God is my strength and power, And He makes my way perfect.’ ” 2 Samuel 22:31-33
We get to visit our family doctor in Durham tomorrow, and on Thursday Mark will be driving down to Kitchener to have an old root canal re-done. Please pray for him as he hasn’t had good experiences with dentists and root canals.