I decided to write a blog today to give a good update on Jaxson. May was such a busy month, I think we had a total of two week days without an appointment or event of some kind, and many days had more than one item on the agenda. I will admit, though, that through May, there wasn't much to update you on. Jax was doing great, eating well, doing fabulous in school and just being his normal, happy self. The only thing that changed in May was that Jax started changing colors almost daily. He would alternate between turning purple/blue around his lips to losing all of his color completely and his skin would be clammy even in the 80 degree sun. Which brings me to my first update:
Cardiology. Jaxson was originally scheduled for his heart echo on 7/20, but because of the symptoms he was presenting, I called and they requested he come in the next day. That always puts me on high alert, when they want to see him so soon and squeeze him into the schedule. The good news that came from this appointment is that his valve looks great! His gradient is down from his last echo, and based on his other previous results, the hope is that his last gradient (14) is a one-off since his current gradient is 8. A number of things could have caused it to appear higher than it was. So no valve replacement yet, which is a relief! But it also means we had no explanation for the color changes and such, so they told me to take his temperature when it happens and see if he's running a fever. Jax doesn't typically run a fever unless he's really sick, so I'm not anticipating that changing. Still, I'll do what they tell me haha. The second portion of the appointment did not go so well. Jaxson has some irregularities on his EKG. First, he has two superior vena cava's, the part of the heart where de-oxygenated blood flows in to the atria. This is not a defect, it is considered a normal variant, but I was unaware of it until last week. Second, he has a premature ventricular contraction (PVC), which is basically an extra heartbeat. Because he hasn't had this before, I'm not sure what it means. My sister and my grandfather both have this as well, it was benign for them. I'm just not sure if it's something that would have always been present or if it can show up at any time, so I will mention it to the doctor the next time we talk. Third, Jaxson has irregular P-waves. That's the first little bump on the EKG before the tall one. Sometimes that little bump goes up like it's supposed to and sometimes it goes down, but it's inconsistent. So we left cardiology on Friday with a 24-hour EKG monitor which I sent back this week. This should clarify some things for them and I will get a call in a couple of weeks with the results. Honestly, I can't even do research on it at this point. The heart is incredibly complicated, and researching any irregularities can be depressing and scary. I plan to wait until they call me with the results before I do any crazy research, but I do know that this could be something within the chamber. What that means, I don't know yet. I'm trying not to spend too much time considering what it could mean. Looking at his overall EKG, I can see a lot of differences between his beats and I get the feeling that something is going on, I just don't know what. And it's possible that I'm wrong, maybe all of this is benign and Jaxson just wants to make me go gray at an early age!
Sleep Study: Jaxson had a neurosurgery appointment on Monday, which I'll get to next, but first I wanted to go over this part. I had them print out his sleep study for me since complex care never called me with the results. Jaxson has reduced sleep efficiency and snores about 85% of the night. He also had 7 episodes of central sleep apnea. It sounds scary, but his oxygen saturation never dipped below 90% during the episodes, so right now we are just monitoring it. If that would change, it's possible he would require a CPAP machine, which I imagine will make getting him to sleep more difficult.
Neurosurgery: Because of the sleep apnea, the fact that he hasn't had imaging in 2 years, he's been tripping and falling a lot more lately and his extreme sensitivity to small things, we are doing a sedated full brain and spine MRI. It is not scheduled yet, but it should happen in the next month. They'll look at his Chiari to see if it has changed as that could be the cause of his sleep apnea as well as balance problems. He's having a urodynamics study on 7/2 which will tell us more about his bladder function and control since we're having so much trouble getting him potty trained. We want to make sure we aren't fighting an uphill battle with incontinence, and if he is incontinent, it could be related to his tethered cord. Thankfully, since it's just sedation and no risk of bleeding, I won't have to bridge his Coumadin with Lovenox for the procedure.
Best for last, Make-A-Wish: I got word last week that Jaxson was approved for Make-A-Wish! I am beyond excited and elated at the prospect of Jax getting to have whatever he wants. Right now, it's a toss-up if he's going to pick something Shinedown related or WWE related! We will have a Wish Discovery Meeting this fall to sign the necessary paperwork and that's when Jax will tell them what he wants. We'll be working on honing it down until then!
I think that's all for now, and I think that's definitely enough. It's so hard to tell the doctors everything that I think is going on with him when most of the time he is a pretty typical almost-6 year old. He loves to be outside and play with other kids, he constantly bangs on anything he can like he's playing the drums and now says he wants to learn to play the guitar and take singing lessons! If you saw him on the street, you'd totally call me crazy for thinking there's anything at all going on with this kid, but I guess that's why I'm his mom. I know him better than anyone, and even if the MRI shows nothing and the EKG comes back with nothing, I'll know I did the right thing because it COULD be something. I told my family, if something is going to go wrong, can't it be something we already know about? All of this new stuff with his heart is killing me. I had a feeling he'd have to have more spine surgery as he grew, but I was beginning to be hopeful that I was wrong. I still could be, and I pray that everything comes back clear, but this is Jaxson we're talking about! We've gone 30 months without him being cut open, a streak I'd like to continue. It will be a few weeks before I have the results of any of his tests, so please be patient as I am waiting too. And please, please pray.
With that, I'm done. I want to thank each and every one of you, especially if you made it this far, for being such an amazing support system for our family. We truly could not do this without the love and support of all of our family, friends, and strangers across the globe who consistently pull for our boy. We love you! <3
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference." ~Anonymous
