After the first surgery we had 8 months until the next one. They did a heart cath in between and also had a couple appointments with the cardiologist. Things went very smooth between surgeries. The third surgery went off with not much of a hitch. The only thing that they weren’t able to do is to fix the hole. If they had fixed the hole it would have caused too high of pressures in the right side of his heart and caused heart failure. This meant another surgery a year down the road but we knew the drs know best so we were fine with it. They also placed a valve in his heart that was to help with the blood flow to his lungs. We spent a week in the hospital and felt like everything was going as smoothly as we could have hoped.
We got everything back to normal and I was back at work and he was off to daycare. That lasted about 2 weeks. He was just not acting like himself and we were afraid he was getting the flu. He hadn’t gotten the flu shot yet and since he was so off we took him to the local ER. They checked his saturations and he was at 55 (80 was normal for him at the time). The local ER panicked (as was our typical response from them) and took him by ambulance to the Children’s ER. We were met there by a member of the cardiology team who didn’t seem super concerned but admitted him for observation. When our dr came in the next day he wasn’t sure what to think. His initial thought was it was an infection that needed to run its course. After more tests and further observation they thought he had pneumonia because he had a cloud near the left lung. We spent several days in the hospital trying to figure out what was going on. We met with an infectious disease doctor, surgeons, cardiologists, etc. No one seemed to know what to do. They saw a pocket of ‘fluid’ that they considered draining but didn’t want to risk opening him up and spreading an infection. By the grace of God they finally decided to do another heart cath to see if they could see anything else because his saturations remained so low. They had just come to ask us if it was okay if they place a central line so that they would have access in the future (they had issues getting IVs into him) and then came back shortly after to inform us that they found the problem!
Seems that the valve that they placed was leaking some and created what is called a pseudo-aneurysm in his heart. Basically it was a pocket of blood that had pooled from the leaking but was being contained. Had they gone in to drain the ‘fluid’ they may have punctured it and he could have bled out! They scheduled surgery for the next day (which happened to be my birthday) and had to go in carefully so as not to puncture this pocket of blood and fix it. The surgeon informed us that this happens about 1 in 1000 cases (every 3-4 years for them) so Avery was still on his streak of luck. The aneurysm was called ‘impressive’ by the surgeon. It was a wonderful birthday present!
We were in the hospital for another week after the surgery. He missed Halloween and but I was able to go home and spend the night trick-or-treating with Blake. Let me just say that it is very difficult at times to devote your time to a child you know needs you but feel the heart strings pull back home too because you also have another child who wants to be with you. It is tough to be tugged in two directions!
To be continued…