Smile through the pain

It has been oh, so very, long since I have been here. As Willow is getting older, she still shines a light so very bright to everyone she meets, and we love that about her. She has been doing so very well in her everyday life that we sailed along each day without too much thought. Until recently. Setting aside any thoughts of the current status of the world, I want to take a moment to share how Willow has been. 

She celebrated three years of surgery free back in March, and it was truly a happy moment for her and our family. She has never made it this far without going through another brain surgery. So we are very excited to see how her hair is growing, how she is growing, how her personality shines through. But lately, she has once again, experienced headaches, that kind of come and go throughout the day. This has taken place for much of July. She also threw in there a few days of being tired, still mobile, but more tired than usual and no real reason for it. Sometimes she gets emotional, and her emotions can get very big when she isn't doing well, and that has been taking place more so this month as well. She threw in a few new things also, needing a bowl to sit next to her in case she gets sick in the middle of the night, and it hurting her to move her eyes and lookup. 

I called her neuro team a few times this month to share what was going on, and we agreed the first time to watch and see. When she added in the two new things (bowl and eye issues), I asked if we could come in and check the setting of her programmable shunt. You see, once before (about a year and a half ago or so), it changed on its own, despite the machine not being set up to do that. But, it's a machine and well, things happen. I asked her team, if we could check the setting, it is least invasive, non-radiating, and truly a five-minute issue. They declined, stating it can't happen. I mean, I get that it isn't supposed to, but it has, and this new doctor wasn't having any of this conversation. 

I decided to also call her ophthalmologist since she was having eye pain and see what they had to say. Thankfully, she has an excellent care team there and they got her in the next morning (I had called quite late in the afternoon), to give her a full, with dilation, eye exam. We did find that she has a script change but to her benefit. You see she stopped wearing her glasses some time ago saying they hurt her eyes and she couldn't see. I really didn't believe her, but lo and behold that was the case! They also said her optic nerve looked great and they didn't see any swelling. 

I had talked to Willow and we decided to go and see if we show up to neuro in person will they check her shunt setting. Guess what? They did! Would you like to know something else? The setting had been changed somehow. We truly do not know what or how this happened. This machine is set to a certain setting to drain the fluid from her brain and into empty space in her abdomen, it is meant to stay at that setting and only be changed in an MRI, or with a super duty heavy magnet. We don't have those just lying around. It just happened. It can happen, while rare, it can happen. But her team, looked at me as if I was still crazy. I literally looked at the gal fixing her shunt when she said in disbelief, "it's not at the right setting", and said, "well, at least I know I am not crazy!" Yup, I was snarky. For those that know me, that isn't a surprise. She called the neurosurgeon who decided to see her in the office that day and to place a rush on the already ordered MRI waiting to be scheduled. So we went over the bridge, had the MRI done, came back, spoke with the doctor who said nothing has changed, except now her vents are smaller. She now has Slit Ventricles. He then talked about how it would be a good idea to do ICP monitoring. We don't know much about that, but basically, he is really pushy, not one who likes to listen to the families he treats, and truly I am emotionally spent today. I spent my morning fighting for my daughter who currently has a voice, and knows how to use it, but also is a minor and needs me to fight for her behalf. They did not want to check her shunt and see if that fixed her symptoms, they wanted to ignore that it had happened before. He wants to do ICP monitoring to see if that is causing the headaches, and I can see the benefits to that, but what was causing the headaches was the setting was wrong. No need to put her through another surgery when we already have the answer to the problem. 

I just share this as a reminder out there, we know our kids. Yes, I want to trust our care team, and I do, for the most part. But sometimes, we need to stand a little taller, say things a little louder, and show up, when they want us to back down and follow. If I had just waited for the MRI first and then saw the team, they truly would not have found that her shunt was on the wrong setting, because it's expected to be after an MRI. They would not have learned something new to them today, and honestly if we had waited for whenever this MRI would have been scheduled, how much damage could have potentially been done to Willow's brain? 

I don't like to hang out in the What If realm, there are too many questions, too many problems, too many things that may very well never happen. But sometimes, it creeps in, and I listen for a moment to remind myself, that I have instincts and I know my kiddos and it's good to not doubt, it's good to ask questions of the care team, and it's okay to push back sometimes. 

So, if you are having a rough day, I say take a page from Willow's book... She smiles through it all, looks for the beautiful things and truly just takes a moment to dance in the rain.