Many people have been asking how we are doing. I post a lot about Jaxson, and I try to include everyone else when I can, but lately that hasn't happened. So rather than post something horrifically long on Facebook, I decided to blog. I have no idea how long this will end up being, or how erratic my writing will be, so please be prepared.
We'll start with a quick bit about Jaxson. I've noted what's been going on with his head, but not how he is doing overall. Jaxson is actually doing quite well, believe it or not. He's always in a good mood, and even when he's mellow he's still ornery. Most days you'd never know there was anything wrong with him but for the bulge on the side of his head. His gait is off-balance, but we're not too worried yet. I wouldn't walk straight if there was more weight on one side of my head than the other either! He's just such a happy kid, it's so hard to even tell when there's something going on with him. He never lets anything get him down!
Jeffrey has always been one of those kids that goes in cycles. He will have a streak of fabulous behavior and then a streak of being horrible. The streaks of good behavior are coming fewer and farther between, so it's clear that he's struggling with this one. Jaxson has been to the neurosurgeon three times in less than two weeks, plus other appointments. Jeffrey knows something is up, we've had to make too many trips, and he's worried about his brother. He wants to play with Jaxson so bad, and he does, but we have to remind him to take it easy because of Jax's head. It sucks. All they want to do is play together and they can't even play like normal boys. So Jeffrey acts out, he throws fits, he cries for no reason and he's become increasingly violent and rough. We take him to behavioral health in November, and besides the ADHD they're going to diagnose him with, I'm worried about other things that aren't quite as easy to help him deal with. No, I do not think ADHD is something "easy", but I have experience with it and I have learned techniques that work with Jeffrey already. I will not medicate him unless there's no other option. I'm just ready for this evaluation so we can work on getting him the help and coping skills he needs.
I think the best explanation for Jayson and I is tired. We're tired, drained, scared and worried. We're tired of the appointments, of the endless hours of waiting for someone to get back to us with answers, tired of never having a definitive answer or course of action, tired of not getting to spend time together or even share a bed. We haven't shared a bed since surgery because Jeffrey has a tendency to sneak into Jaxson's bed. They both move around a lot at night, so it's not safe for Jaxson for them to sleep together. So Jayson sleeps with Jeffrey and I sleep with Jaxson. Going on two weeks now. Our marriage is as solid as it ever has been, and our lines of communication flow freely, but it just sucks. We're drained from worrying all the time. Wondering if Jaxson will be awake in the morning, or if the next surgery is going to go as planned. Terrified that anything might happen to our baby at any given moment. And on top of this we have to take care of Jeffrey, who is clearly the biggest loser in this situation. He gets less attention now and we worry that we are missing something with him. We haven't even had time to get his school supplies or uniforms, and school starts next week! He's always waiting on us for something because Jaxson needs so much attention. And Jeffrey is SUCH a good kid, it is heartbreaking to watch him deal with this. Almost as heartbreaking as it is to watch Jaxson deal with it. It's hard enough watching one of your children regress because of a medical issue, but add to that watching your other child regress to toddler-like behavior and you have a pretty good dose of guilt built up.
Earlier today, Jayson took Jeffrey to pick up some paving stones from a friends house for the back yard. That left Jax and I at home for awhile. He sat on my lap for awhile and we watching Signing Time. I am not an emotional person, so I usually know when I'm due for a good cry. I've been due for about a month, so I wasn't all that surprised when I teared up holding him. Jaxson doesn't see me being emotional very often, so he wasn't quite sure what to make of it at first. Then he just looked at me with those big blue eyes and gave me a big ornery grin. It was as if he was saying, "Hey mom, it's cool, I got this!" How is it possible that such a tiny human being can possess so much strength as to hold up his own mother? And while tears streamed down my face for a little while longer, I wasn't quite as upset as before.
For me, the biggest frustration is having to explain to people that even after he gets the shunt (if he needs it), he's still not okay. In fact, I have to keep a very close eye on him all the time after that to make sure the shunt does't malfunction, get clogged or get infected. Any one of those things is an ER trip with immediate surgery. Having surgery with a shunt in place creates all kinds of new risks we have to be aware of. We would have to take precautions anytime we took him somewhere where the air pressure is different. I have to look this up, but I don't think he will be allowed to participate in contact sports. So if that's the only way we're going to fix his hydrocephalus, then of course we will do it, but there is a whole new load of things to learn. But not everyone is educated on things like this, and why should they be? I knew nothing of it until I had to, so I wouldn't expect most people to understand. But it is frustrating. Hydrocephalus is a lifelong condition. It does not go away, so no, Jaxson will still not be okay after this. Not even with regard to his head, but everything else that goes on with him.
I have to say that this has been the hardest issue for me to deal with. I know it's a pretty serious problem, but I don't think I've been this scared of losing my baby since they took him off the heart medication in the NICU. Because, like heart conditions, hydrocephalus can sneak up on you at any time. There's often no tangible cause for fluid to suddenly build up, that's why people with hydrocephalus are monitored so closely.
It's now after 10pm and I can't believe I haven't turned into a pumpkin! I'm beat, Jax is asleep on the floor and J is asleep on the couch and Jeffrey is in bed. I suppose I should join them if I want to be able to function in the morning. Oh who am I kidding? I eat little and sleep less, I'm sure I'll be up for awhile and will still hop out of bed at 6am to get my day started tomorrow. Good night!
"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."
Tuesday, August 19, 2014
Sunday, August 17, 2014
Insert Witty Title Here
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."
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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