I've had this blog in my head for days, and just haven't had the time to sit down and type it out. Between the two boys, I might lose my mind before school starts! But I digress. Already. Today's blog is solely about Jaxson and my personal opinions about what the future may hold.
First, I want to bring you back to January of this year. If you recall, we took Jaxson in for a CT because we were concerned about pressure. Because he still had his distractors and the CT didn't show anything, they took out the distractors and did an MRI. Even though his ventricles were enlarged, we were told no hydrocephalus. I was as confused as you are. Fast forward to March, I essentially forced neurosurgery to scan Jaxson's brain/Chiari because I felt he was having pressure again. Again we were told no. Fast forward to July and the eye doctor appointment. We are told his optic nerves are elevated and he needs an MRI to check for hydrocephalus. Lo and behold, proof. I had been screaming it for 8 months before I got the doctors to see what I saw. Ironically enough, it was our new NS that found it, which is a good sign I suppose.
So, hydrocephalus finally diagnosed, Dr. Governale discusses Endoscopic Third Ventriculostomy with me and how Jax is a good candidate and may save him from needing a shunt. I agree and we schedule surgery for the following week. When I get home, I let everything process and sink in, and then I reach out to my amazing Facebook groups for opinions. Some of the people I've met are extremely knowledgeable about certain conditions, and some of them are REALLY good at reading brain MRI's (which I am not!). The bulk opinion was that Jaxson's head is too small and needs to be expanded again. However, Jaxson's head is growing on the same curve it has been since his distraction surgery. I've been keeping an eye on it myself and there's nothing concerning there so far. So I agreed to do the ETV to avoid (hopefully) shunt placement.
Initially, everything seemed to be going really well. Jax was ready to go home the day after surgery and he was pretty happy. Then he ended up with a HUGE mass of fluid on the side of his head. I took him in to NS before another appointment just 5 days after surgery. NS ended up draining over 40mL of fluid out of his head and wrapping it with an ACE bandage for pressure. It sounds like there's a tiny hole in his dura, and keeping the pressure on it may help it heal. Now, almost a week after the fluid was drained, Jaxson refuses to keep his wrap on and his head is not getting better. It's not getting worse either, so that's good, but it's not getting better. So I finally followed my mommy instincts and placed a call to Dr. Jackson, Jax's first NS who we absolutely loved. He let me know that from the sounds of everything, treatment has been reasonable and we need to give the ETV time to do it's job. He said he once had a patient who had a similar bulge last 9 months! He said that was a different situation, but I'm glad he said that because now I won't have a heart attach when the swelling doesn't go down as fast as I think it should. He said that it's possible that as pressure goes down in his head, Jaxson's Chiari may get better as well, which is awesome!
The other thing I asked Dr. Jackson about was Jaxson's spine. Since he did the un-tethering procedure, I wanted to pick his brain about what the obstacles were during that surgery. That man has an amazing memory! He doesn't have access to any of Jaxson's records or his operating notes anymore. He remembered that Jaxson's spine looked rough on the initial MRI, and he remembered that the procedure itself was not satisfying for him. He said that Jaxson has a lot of arachnoid adhesions, and that he basically did as much as he could without potentially causing further damage. He said that Jaxson's spine is always going to look tethered on an MRI.
Time for my opinions. Please remember that these are just that, opinions. Based on conversations I've had with doctors and what my gut and brain are telling me about my baby.
Here's what I see happening as time goes on. Jax will likely need a shunt. Although Dr. Jackson said that if the ETV lasts 6 months then we have a better prognosis of it lasting a long time. Given that Jax has a huge bulge on the side of his head and that his hydrocephalus symptoms aren't getting that much better, I foresee a shunt sooner rather than later. I see another distraction surgery in our future. The joys of pins. Because I agree with the people that say his head is too small, I mean, a portion of the back of his head is still flat. And if none of that makes his Chiari go away (which it probably won't because of his tethered cord), then he'll likely need decompression at some point in his life. The Chiari may not need addressed for many, many years, but I'm sure that at some point he will need it. It will be a matter of distinguishing which disorder is causing his symptoms.
As far as Jax's spine, I'm thinking that any attempt to clean out scar tissue will be futile. The more Jax grows, the tighter his spine is going to be pulled, and any surgery can cause scar tissue. So if there's scar tissue on scar tissue, eventually his spine won't be able to pull any farther. Mind you, this is as he grows, which he is not doing much of right now. We go back to Endocrinology in February for more tests. Now, Jax is already having some symptoms from the tethered cord. He limps and drags his right foot when he walks, he has pain in his right leg and wants me to rub it all the time, and that same leg did not react to the knee-jerk test the last time we had him at Complex Care. Since it's not prohibiting him from doing anything, it's not even something I'm going to bring up to the doctor. I'm leaving that alone for as long as I can because there are only four options when the time comes: Leave it alone and see how he does, attempt un-tethering again, shorten the spine, or spinal transection. You can see my dilemma. He's 2. He probably can't even have his spin shortened or transected until he's done growing. I don't know that, but it makes sense. Not that I like either of those two options. Thankfully, that's not something we have to worry about right now, but it is something that weighs on me at times.
Jaxson is such a joy to have in my life and an amazing light to everyone he meets. I have no concerns about his cognitive ability (kid is smart!), just his current and future physical limitations. As long as he keeps that smile on his face, I know everything will be okay! I've seen so many things on the web lately, I can honestly say that I would rather have Jax here and need constant monitoring than for him to not be here at all. I cannot bear what the parents of kids with cancer go through, especially if the battle is lost. I cry every time. For the parents as well as the loss of a beautiful soul. So, I take comfort in knowing that, as of right now, there is no threat to Jaxson's life expectancy. I hope that doesn't change, but if it does, I'm sure we'll beat it like we have everything else!
~"Life is not the way it's supposed to be, it is the way it is. It's the way you cope with it that makes the difference."
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