I normally wouldn’t publish a post unless I had something witty or sappy and maybe funny to write and made sure it was well thought out. But I’m feeling a bit numb emotionally, and if I don’t write an update now for family and friends to read, and for Matt and I to look back on later, I may never remember it, so here goes, my best recollection of the last 13 days, as I sit bedside Henry’s crib in the children’s ward. For reference, Henry is 6 months old.
We thought this surgery would be straight forward. Henry’s case seemed pretty black and white from the cardiac teams point of view. Of course we were warned there was always the unknown of what we can’t see on the monthly cardiac ultrasounds (echos) he had since 19 weeks in utero. Well when his surgeon opened him up, there was a surprise. An extra coronary artery lying directly where she planned to make her incision to enter the heart. Because of this, she wasn’t able to completely patch his large VSD (the hole in the wall between the chambers of his heart). A surgery that was expected to take 4-5 hours took over 7, and once they removed the bypass and pumped blood back through his heart, the surgery had already gone too long to continue what was left to repair. The surgeon said there were three outcomes for this 3-5mm hole 1.) it could close on its own, 2.) one can live with a small VSD without repairing it, but not likely a heart that has been through trauma such as surgery, can live a healthy life with it 3.) they would have to go in again and repair, either as soon as the following week, or later on. First we needed to see how he does with out the intubation.
It had been eight hours since we walked Henry down to surgery and watched him peacefully fall asleep with anesthesia before they wheeled him into theater. We couldn’t wait to finally see him. I had been expressing milk all day to save for when he would be cleared to start feeding through the nasal -gastric tube, and felt completely well and optimistic. Within an hour of seeing Henry after surgery, I could hardly stand, had teeth chattering shakes, fever and nausea as a result of mastitis (infection often associated with nursing) and needed to be rushed to a nearby hospital myself. Matt had to come with me since I could hardly walk and by 11pm they were transferring me to another hospital to be admitted. My blood pressure was low, and my fever and heart rate were high. I hadn’t slept much the week prior, and I probably wasn’t drinking or eating nearly as much as a nursing mother should. I was exhausted and it had caught up with me at the worst possible time. I sent Matt back to the hospital accommodations and couldn’t wait to get some sleep myself. I was released the next evening after a day of sleeping, eating and fluids to regain my energy.
Henry progressed well the first few days. Extubation two days later was a little rocky, but overall went ok. We were removing lines and tubes left and right, check ✅ , check ✅ , check ✅ . He was sedated throughout this time and had a sliver of eye openeing every now and then- totally normal. On day 3 they really wanted him to wake up. They removed the sedation and dialed back the morophine. Soon he started to wake and I was able to hold him and was able to nurse which was a big milestone. They kept the feeding tube in for medications and night feeds since he was in the Paediatric Intensive Care Unit and parents were not allowed to sleep bedside. (They gave us a room down the road to stay in.)
Our super mature, and eager to learn five year old Dexter came for a visit. We had talked about Henry’s surgery for months prior and shown him pictures and described what the surgeon did, and he asked to see the blood, and seemed totally chill with all of it. We were wrong. He kept his cool during the short visit and as we walked out he said, “I don’t fell well mom.” I got to go home with him that night and needless to say, our uber driver didn’t give me 5 star rating after what happened in that car on the way home.
The next day, more big lines came out and Henry was awake, but not smiling. That’s ok, I had read other heart parents reporting this with their children post surgery. Naively I read those posts and thought, “Not my kid, I know I’ll get him to smile.” I was wrong. He wouldn’t budge, just stare blankly. On the morning of day 6, thanksgiving day, we got a smile. That afternoon, things went south. His breathing was loud with strider, his chest was recessing (skin pulling in below ribs) and he was working way too hard to breath. We would find out later that he had contracted a virus- just a common cold, but for a post-op heart baby, this situation could be dangerous. He was put on oxygen through a nasal cannula which was so hard to see. It forced flow up his nose, which caused him gasp and swallow- which caused pain from his sore throat from the virus . I held him for four hours while he wavered in an out of painful cries and blank, sad stares. While holding him, I also noticed one of his legs was purple. He had a line in that was blocking circulation, but there was still a pulse so they would leave it for the night because they didn’t want to upset him more. I cried the whole walk home that night. a loud, gasping cry that despite my efforts to muffle, I couldn’t hold back the whimpers while passing strangers on the street. I had stayed strong and positive long enough and this was getting to be too much. Matt was home with the boys and his mom having Thanksgiving dinner, because those sweet little boys deserve as much normalcy in all of this as we can provide them.
Henry’s breathing got better, and the line was taken out of his leg and on day 12 color fully returned to that leg. He appears to be over the virus. He was discharged from the High Dependency Care Unit down to the children’s ward yesterday, so I am now able to sleep on a cot next to him…..along with 4 other babies and their moms because most of the rooms here are shared bays (multi-bed rooms). Before he was discharged off the HDCU, they noticed there is an inflammatory marker on his bloods that is abnormally way too high. He hasn’t had any fevers, but he seems like he is in a lot of discomfort and pain and arching his back. We think it’s reflux related to the tube and maybe some of the 6 meds he’s still on that get sent down that tube. We removed the feeding tube yesterday and that has helped his comfort some. The inflammatory markers on his bloods are coming down. they started at 174, last night they we 88, and I believe we want them between 30-40. A blood culture came back negative for any infection. My theory is that the inflammation marker was so high because of his purple swollen leg that is now better, hence the marker number going down. My PAC sister agreed with me. The doctors didn’t think so. At this point, we just need that number to get back down to normal and need him to feel more like himself. I’m still waiting to see him smile again. in the last 13 days Matt and I have only gotten a handful of smiles. He just isn’t himself and it’s so hard to see. I always thought the hardest part of all of this was going to be the fact that we couldn’t explain to him what is happening and why. That still holds true.
I should mention that these complications in the last 10 days are not directly related to Henry’s heart condition. They are just setbacks that have kept him from moving forward with his recovery and being discharged to go home. With that said, I received an update from his cardiologist this morning. They discussed Henry’s case and he will have to undergo this surgery again in 3-6 months. They of course want to let his body and heart heal from this surgery before disrupting again. Right now we are working to get Henry’s complications under control and get him well so we can see how the residual hole affects him from a more realistic day to day point of view.