Where in the world has the time gone? It has been over four years since I last posted. FOUR YEARS! I can't believe my account hasn't been deleted due to inactivity or something. Do people even read blogs anymore? Well, in the off chance that they do, here is a long overdue update.
Well, needless to say, a lot has happened since my last post. On the medical side of things (let's get that over with first), Xavier did have his Fontan in January 2013 as scheduled and thankfully had a fairly uneventful recovery. Home from the hospital in less than one week! He was going strong these last few years with only regular cardiology check-ups every 6-9 months, and apart from the first couple of months after the Fontan, his only medication has been a daily dose of aspirin. There had been no emergency room visits, hospital stays, or extra procedures. It was great! Life felt (dare I say) normal. Then in December things took a slight detour. He had his regular cardiology appointment and everything was looking good until we got results back from some lab work. His labs showed possible liver issues. Now for those unfamiliar with the Fontan, liver damage is a long-term complication that has come to light in recent years. There is still a lot unknown about why Fontan patients develop liver damage and when it starts to develop. The current standard of practice is to begin checking the liver around ten years post-Fontan. Because that is the standard, we were a little surprised to find evidence there may already be a problem. So additional tests and procedures were scheduled.
Before we could follow-up on the liver, Xavier threw us for a loop by fainting at school without a clear reason why it happened. The school called me at work to let me know the paramedics were there and would be transporting him to the hospital. Talk about a scary phone call to get! He was pretty out of it and fatigued when I got to the hospital, but otherwise seemed okay. Thankfully, his teacher had ridden along in the ambulance so he had someone he knew with him the whole time. She even stayed with me until Matt could get to the hospital. She is pretty wonderful! After spending the afternoon in the emergency room, the doctors decided to admit him overnight for observation. We never did get a reason for why he fainted, although he did develop a fever after he was discharged so it may have just been the beginning of a virus. While the experience scared me, Xavier just went with the flow. He said he thought riding in the ambulance was a little fun and his night in the hospital wasn't so bad either, especially because he got pancakes for breakfast. Ummm...okay. Glad he took it so well!
The week after our unexpected hospital stay, Xavier finally went in for an MRI of his liver. He was less than impressed that he was required to have another IV placed since he had just had one the week before and he hates "pokies" and the tape needed to hold the IV in place. There may have been some screaming and lots of tears, but he made it through. Holy moly MRI machines are loud! I was allowed to go into the room with him and between the earplugs and the noise of the MRI, I could barely hear a thing. Xavier yelled out at one point as the machine was making what can only be described as a siren-like noise "Mom! Is it supposed to be doing that?!" They had warned us about loud noises, but I certainly wasn't prepared for it to be THAT deafening. Hopefully it will be awhile before he needs another MRI.
A few days later, Xavier's cardiologist called us to let us know the MRI showed mild to moderate fibrosis of the liver. Not what we were hoping to hear, but glad that the damage to the liver isn't more extensive. The next plan of action was a cardiac catheterization to see if there is a "mechanical" reason for his liver to already be showing signs of damage. He went in for the catheterization on February 1. He was amazing and brave before the procedure. He had a fun ride along the hallways on the way to the catheterization lab and chatted with the nurse. There were no tears at all and after the nurses told him they wouldn't do the IV until he was asleep (sedated), he didn't even seem nervous. He was a little more unhappy when he woke up after the procedure because he was not allowed to sit up or move around for about 6 hours. In the recovery area, he kept telling me that the doctors didn't do anything. Apparently, he was convinced that he just took a nap and that the doctors never did the procedure. I guess that means he didn't feel any pain from the procedure.
His sentiments that the doctors didn't do anything kind of reflect how Matt and I are feeling about the catheterization though. They really didn't DO anything. That is good and bad news. It's good because that means there were no problems with his Fontan that needed correcting and there was no narrowing increasing pressures inside the central venous system. We also learned the PAVMs, that were mentioned in a previous post (back in 2013), have gone away completely. Those are all good things from the heart standpoint, but it also means we don't have any more answers about his liver. The catheterization did show elevated pressures (but normal levels while resting). There was also some narrowing near the liver, but there were concerns about opening it in relation to Xavier's Fontan fenestration, so for now it has been left as is. The doctor also performed a transthoracic liver biopsy while Xavier was under anesthetic and has suggested yet another liver test called a fibroscan. We will be meeting with the cardiologist who performed the catheterization next week to discuss options moving forward.
So that is where we are at medically. I'll write a part 2 to my long overdue update to share how Xavier has been otherwise.
Xavier is now in the first grade and absolutely loves school. He takes so much pride in getting his work done and is excited to learn new things. He loves reading (he is currently reading Harry Potter and the Sorcerer's Stone) and has been taking two spelling tests each week (his choice to do two). Math is one of his favorite subjects in school and he is working on multiplication and division. I find it crazy because I'm pretty sure I was just starting simple addition when I was in the first grade. I remember being told at the very beginning of our CHD journey that it was very possible that Xavier would have learning disabilities as a result of the CHD and surgeries. He has decided to defy the odds once again and continues to amaze us with what he is capable of.
