I apologize for it taking so long to write an entry about Xavier's heart surgery. We update Xavier's CaringBridge site during hospital stays and I forgot about updating here as well.
Today marks four weeks since Matt and I handed Xavier off to the doctors and nurses at Rady Children's for his third open-heart surgery, fifth surgery overall. I can only speak for myself, but it seems to be getting more difficult to send him into surgery with each one. As it turns out, there was not need for worry, because Xavier once again showed the world what a heart hero he truly is.
This surgery was initially planned for the beginning of September, but was postponed due to his emergency intestinal surgery. Going into surgery, the doctors were hopeful that they would still be able to do a bi-ventricle repair. Although Matt and I maintained a glimmer of that hope, realistically we were anticipating that they would have to proceed with a single-ventricle repair. We had been so devastated last December when we thought for certain a "full" repair would be possible, that we had to plan for a single-ventricle repair this time. As it turned out, Xavier's heart anatomy is just too complex and not positioned in a way to allow for a bi-ventricle repair, so the surgeon proceeded with the single-ventricle repair. The surgery Xavier ended up having is called the Kawashima Procedure.
On the day of surgery, we arrived at the hospital at 5:00am, as Xavier was scheduled for surgery at 7:00. Xavier was in good spirits despite having to wake up even earlier than he normally does and not being able to eat or drink anything. It helps that for surgery we are in a part of the hospital that he doesn't see very often and there is a small playroom, and also that there are other little kids for him to observe while we are in the waiting room. He loves to watch other kids. I joke that he is my little sociologist because he is often content just standing in one place observing people. A nurse took him back to the operating room at exactly 7:00 to be prepped for anaesthsia, and we were sent to the cardiac surgery office to get a pager so they could contact us during and after surgery. I cried when they took him, I just couldn't help it. I was hoping that experience would make handing him off easier, but as I said above, it only made it harder.
After Matt and I got the pager, we decided to go across the street to the Ronald McDonald House. We don't stay there while Xavier is in the hospital because we live close enough to the hospital to drive back and forth as needed, but it is nicer to wait there than being stuck in the surgical waiting area. We always pack too many things to do to keep our minds occupied while Xavier is in surgery. This time we had games packed, but I could not bring myself to play them with Matt. I spent a good deal of time staring out the window at the rain falling down outside. It was such a gloomy day and the weather matched my mood perfectly. I kept singing "You Are My Sunshine" over and over in my head. It is one of the songs I often sing to Xavier when he is upset and it helped bring me a small amount of comfort too.
We received a couple of updates during Xavier's surgery. At 9:40 we received a call from a nurse that he had finally been placed on the heart-lung bypass machine. Around 11:00 is when we found out the surgeon was unable to do a "full" repair and would proceed with the single-ventricle repair. The best call came about an hour later saying he was off the bypass machine and would be heading to the ICU shortly.
We were able to speak with the surgeon before finally being able to go in to see our precious heart hero. One thing that hasn't necessarily gotten easier, but has certainly lost some of the shock value, is first seeing Xavier right after surgery. I know what to anticipate, but it still isn't easy to see my little boy hooked up to so many IVs and machines. It always seems so overwhelming for his tiny little body.
Xavier's recovery happened pretty quickly. He was extubated (taken off the ventilator) within just a couple of hours after surgery. He was incredibly aggitated and in pain and the first two days were very intense. He would scream and cry inconsolably, despite the many medications they were pumping into him, including pain medications and sedatives. We had heard about the "Glenn headaches", but really had no idea what it would be like. It was simply awful. There are no words to describe how terrible those first two days were. I felt like it would never improve and we would be in the hospital for a very long time. However, on the third day, things were suddenly better. We were able to console him again (by holding him and playing Norah Jones - his favorite) and he was taken off most of his pain medications. After that, Xavier improved very rapidly and was able to be discharge on the fifth day! This was his shortest hospital stay after surgery yet!
Xavier has been doing great since surgery and is even more active than ever! His oxygen saturation levels are still a little lower than we were expecting to see (they were at 88% at his last follow-up appointment), but his cardiologist says it can take the body a little while to adjust to the new circulation. Hopefully we will see them rise by his next cardiology appointment later this month. We are expecting them to be mid-90's.
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