I want it to be Thursday so I can take Joshua to the neurosurgeon so she can examine him and talk to me about the MRIs (I've looked at them, compared them to past MRIs & gotten the radiologist's report, but Dr. W's opinion is the one that counts in this situation) and tell me what we're going to do.
I'm terrified of what she might say.
Without going all drama llama on you, the blunt truth is that no option really looks very good. Either Dr. W will say that Joshua's got good fluid flow around the back of his head (where his chiari is) or she'll say it's blocked. If he's got good flow, then that means increased intracranial pressure is the most-likely culprit for his chiari symptoms and we need to treat it. The problem with that is there's just two choices for treatment: medication or a shunt. I've already explained why she doesn't want to do a shunt, but the medication option is not working well and is guaranteed to not be possible long-term, so what does that leave us? Nothing but trying the shunt with all of its predicted complications. If Joshua's got a blockage of cerebrospinal fluid, then he would need decompression #4 and we may STILL need to deal with the issue of a shunt down the road since decompression surgery does not address the issue of pseudotumor cerebri directly (though opening the dura would lower the pressure for a few weeks, so Joshua would get temporary relief from PTC symptoms as he has in the past after a decompression surgery).
As for his back, I've no doubt he's tethered significantly ~ his symptoms leave me zero doubt ~ but that does not necessarily mean the neurosurgeon will think he needs to be detethered now. It's always a benefit vs. risk analysis and I don't know if he's "bad enough" that it will justify her opening his back yet again for detethering #5. Truthfully, I hope he is, not because I want him to have more surgery, but because I want him to get relief from his symptoms.
I wish I knew already what the plan was going to be. I have the unofficial opinion of one person to draw off of and my own experience with Joshua and his past MRIs to look at as I try to speculate about the potential options available, but ultimately, the final decisions are not mine to make. And the waiting is really difficult.
I think part of the stress stems from knowing that Joshua is in a serious situation and I don't have any knowledge that can fix it this time. In every circumstance to date, I have been able to google, do research and figure out what the problem was & how to treat it. I've printed off information for Joshua's doctors when needed to ensure everyone is on the same page, and I've generally had a sense of knowing what was going on and what steps to take. But now there's a problem that I don't know how to fix. The treatment for the condition works in only 50% of patients and there's a strong possibility that my child won't do well with it, which is why his doctor doesn't want to do it. But without treatment, he's guaranteed severe chronic pain (that could most-likely be managed with strong narcotics like fentanyl patches or IV drugs through his port, but who wants to make their 3.5 year old dependent on pain meds to live?) & the potential for the condition to end his life. So, basically, with or without treatment, he could wind up with the same ending and a sucky journey on the way there. And while my husband and I can tell the neurosurgeon our opinions, the final decision is hers to make because we can't force her to put in a shunt or do any other procedure that she doesn't want to do.
It's waiting to hear what she wants to do that has me on edge.
I know what I am supposed to do: pray. I have been. Charley has been. He calls me every day to talk and to pray with me over the phone. Know what God has been telling me/us? That Joshua is His. That I am to give my control over Joshua to Him (ie: trust Him with the son that He has given me, no matter what the outcome). That this time, I won't be able to wrap my mind around what is happening or figure out the answer. That we are to enjoy the time we have with Joshua NOW ~ that thinking about future days is okay to do, but we can't let it prevent us from enjoying the time we have with our son. That we are to walk by faith and not by sight ~ no matter what the situation LOOKS like, we're to have faith (which is defined in the Bible as "belief in things hoped for and not yet seen"). He has given us songs (most recently, "That's What Faith Can Do" by Kutlass and "He Is" by Mark Schultz) since music 'speaks' to both of us so strongly. Everything comes back to trust, faith and control. Trusting Him, having faith and giving up control of the situation.
This trust, faith and control bit is just as hard as waiting. I'm working on it, though. I have a deep sense within me that I need to be walking closely with God this go-round, and that kind of scares me because I don't know what lies ahead and I'm not at a place where I can truly say I'm at peace with whatever outcome God brings for Joshua. I want him here and I want him to be pain-free and "okay". I guess that's where faith and trust come in, huh? And giving up control so God can do His thing. Like I said, I'm working on it.
But I still wish it were Thursday already.