Wait and See

It has been almost a year since my last blog post. It's been a very rough year for us with Jaxson having lots of issues, Jeffrey is having behavior issues, Jayson started a new job and I am now working as well. Rather than try to recap what's happened, I prefer to start with what's happening now. That's the reason I write, and the best way for me to relieve stress.

So, back in June Jaxson had open heart surgery for mitral stenosis. Prior to surgery, the pressure in his heart measured at 21. Anything over 10 is considered severe. When he was discharged, his pressure was at 10-11, but because it was such an improvement from before, we expected him to recover and be okay. The doctor had told us that Jax was in a gray area of whether he would need further intervention in the future. Of course, it's Jaxson, so we naturally assumed that he would need something down the road. What we didn't expect was to hear that at the beginning of September, Jaxson's heart pressure was back up to 16. Because he wasn't having any symptoms, we were not in a hurry to proceed with surgery, attempting to put it off as long as possible, but knowing he would need it within six months. We scheduled another procedure for him so the doctors can get a better look at what is going on, and he will have that done tomorrow. He has been retching a lot again, taking really long naps (but waking up of and on) and he's just not as energetic as he was even a week ago. We are happy he's having this TTE tomorrow so we can get this process going, as I'm pretty sure it's going to happen sooner rather than later. What we're looking for tomorrow is a plan. Can we get him to the cath lab? Not likely. Because his valve has been repaired, a valvuloplasty could cause leakage. If they think they can keep the leakage minimal to buy him some time, it could be a consideration, but likely not a feasible option. Can we do another repair? Again, not likely. There's going to be scar tissue from his last surgery, and after reading the surgery notes myself, I can't imagine that they'd be able to do anything else. Which leaves us with one option: Mechanical valve.

Mechanical, or prosthetic, valves are never an ideal choice in a child. For one thing, children grow. So as they grow, the valve will have to be replaced multiple times in order to keep his heart stable. The faux valve will be a foreign body placed into his, in a very sensitive area of the body. There's a chance his heart could reject it, although that's not common. The valves come in two different types: man made and animal. There has been a lot of success placing animal valves in people who need them, but there's also the chance the animal valve will fail before the man-made valve. Of course, no one is looking at the kids that just need them replaced because they're bigger. Studies show that man-made valves last longer, but they are so new, that it's unlikely anyone has done a study on kids who need more than one. But it's not time to worry about it because we don't even know the plan yet. After tomorrow, we'll have a better idea of what to epect with his heart going forward.

Besides his heart, Jax has also been complaining of back pain, leg and foot pain, and he's been extremely constipated. So, when he has his TTE tomorrow, they are also doing an MRI of his spine to see if there are any changes, and they'll check his Chiari as well. Any changes with his spine could lead to changes with his Chiari. Tethered cord and Chiari have a lot of the same symptoms, so sometimes it's hard to tell which is the culprit. Hoping that it's just growing pains and nothing has changed, but we know Jax and I'm not holding my breath. I am expecting another intervention with his spine at some point. I really don't want to touch it right now because he's already going through so much. He doesn't ever want medicine when he's in pain, so I'd rather not risk it. The fear being that his spine was tethered with arachoid, which is not a normal thing, and his previous neurosurgeon said that he did as much as he could without causing further damage. Because his spine has already been operated on, he'll have additional scar tissue in there to get in the way. There's no way to prevent scar tissue from forming, and even if the new NS can clean some of it up, there will be even more after another surgery. So, again, wait and see.

Jaxson likes this whole "wait and see" thing. It's never an emergency until Jax decides that it's time for intervention, and then it's a whirlwind of chaos and appointments and information overload. I've added more meds to my list to keep me sane, Jax has added more meds to keep him healthy, and even Jayson (daddy) is taking meds to help with his seizures (epilepsy) and mood. We are all coping the best we can, but I think none of this is real yet. None of it will be real until we have more information and know a plan. I'm terrified they are going to tell us there's something new and crazy going on, because Jax just does that stuff, and trying not to prepare myself for that is hard. It's a fear, one I try to brace myself for every time he is sedated. For instance, Jax is sitting next to me now and he's breathing really heavy and fast. It's almost panting, but not quite. He's only been awake for about 20 minutes and hasn't done anything crazy. No running, no jumping, no beating on anything. Just playing with his toys. It's a symptom of his heart, but I'm worried about his lungs too. If his mitral valve backs up enough, he will end up with blood in his lungs. There's already extra fluid there, so it won't take much.

On a brighter note, Jayson started a new job earlier this year that he absolutely loves. He's been doing some side jobs for extra money, and I recently started working part-time from home. Sports writing has always been a love of mine, and it's something I've been doing for about 10 years. I've been out of the game for a bit, but it's been nice to get back in the swing of things and write again. I think it will help me keep up with this blog too. The release is exactly what I need right now. It's been getting colder out, so taking Jax anywhere is risky. I get totally depressed when I don't/can't leave the house for days on end, so I try taking extra Vitamin D and B12, and if I can get myself to write on a more regular basis, then maybe I can feel like a regular person again. Maybe. For now, I'm going to enjoy watching football with my littlest man since it's just the two of us today. Can't wait for the big boy to get home from grandma's later, I miss him!