Most of us make what I call "Tylenol Choices" for your kids. Your kid has a fever and you give them a dose. You don't worry if you are causing harm or about the implications of that decision. You just do it. The risk vs. benefit isn't even something you have to consider.
When you have a medically fragile kid those Tylenol choices are rare. Most of the time you are weighing complicated decisions where the risks are serious, sometimes even life threatening. This kind of wartime parenting is exhausting and I've written about it often. I am weary of those decisions where harm is likely on either side of the equation.
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| Enjoying the sunshine while waiting for Papa to bring the car around |
The decision to be discharged today is one of those tough ones, but we (along with the medical team) have decided it is time to head home. We are already in the car on our way to our house! The team recommended getting a hockey mask, but we just tried that at a used sporting store and clearly Ollie isn't going to go for it. Right now, our plan is to use a bike helmet and then go from there. There is every reason to think the collapsing will continue, we just have to try our best to keep him safe.
Sadly, we left with no answers...at all. It is so frustrating. In the past 12 hours Oliver had an EEG and it showed no seizures. We did find out that he has low iron so we have a supplement for that, which may help a bit. We are titrating up on a few new meds for his collapsing spells, but based on what we saw in the hospital it is unlikely they will fully address the problem. Sigh. Ugh. I just want to throw my hands in the air and yell "for real !?!"
So we are coming home and hoping that this gets better. Staying in the hospital has real risks including the risk of picking up all manner of viruses, the flu and respiratory infections. We have already had a scary brush with bi-lateral pneumonia back in October, likely caused by a prolonged hospital stay. Remember how that landed us in the PICU with sedation and high flow oxygen? We do not want to repeat that experience!
We return to Raleigh on Thursday for more appointments at Rex with some of our UNC team. We figure if things are still really bad we can come back to Chapel Hill, but we SO hope Ollie gets better, somehow, someway.
In this moment, we are trying to not feel overwhelmed and focus on this beautiful day. We are looking forward to our big fluffy bed, and the tangible and delightful comforts of home. As always, we couldn't have done it without our huge, beautiful, generous and humbling support network. Thanks for sticking with us through all this. You're the best!
2 comments:
Stephanie,
Thanks for the update. Many people are being blessed by your humble and honest testimony of your journey. My favorite verse from the Bible is Romans 8:28. I like the Amplified Bible version and share it with you here:
28 And we know [with great confidence] that God [who is deeply concerned about us] causes all things to work together [as a plan] for good for those who love God, to those who are called according to His plan and purpose.
It feels a little crazy sometimes doesn't it? How can ALL this be going on and no sign on the EEG?! But then I breathe and remember the EEG is only surface testing, it only shows activity that registers on the surface of the brain and so much can be happening deeper that an EEG won't show. That's where a MEG & MRI capture a better picture.
Good for you for going home. Often home is where healing and peace take place for so many reasons including what you touched on, it's so much cleaner! Not all the viruses and germs like in the hospital.
Thanks for sharing Stephanie. Your words and experiences help and guide us other TSC & seizure families too.
xx
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