March fun?

I am generally not this far behind on updating Willow's journey with hydrocephalus when something happens. Yet, this time; I faltered. I didn't jump right in to share to her story, or the fact that she was admitted to the hospital. I posted on my personal Facebook Page, what was going on, and then updated a few key people who needed to know. But, for some reason, I struggled to get words to computer this time.

She is getting older, and as she does; I hope she will begin to take this blog over and share in her own words how her life is going and how she is feeling. But now is not that time. Yet, I still couldn't come here and write an update for those that follow her blog only. I think it all boiled down to I didn't want it to be real. I didn't want this to be the time she has her 17th brain surgery. I didn't want that freakin' shunt to fail on her. Willow on the other hand took it all so much better. She is our ultimate bottle of sunshine, our family's mascot in a way that she shows the spirit we all wish we could. Not because she is the face of a condition she has no control over. 

So now, as we are only a few days away from her post op appointment (2 weeks after surgery), I am able to write. Maybe because she isn't 100% yet, and I fear this appointment will find something; and I better share her story of #17, before we see 18? Or maybe it is just time to write it out. Either way; it's not that exciting (thankfully), but here it is. 

The week ending the 24th, she was having headaches, but nothing too serious, or any that required oils or medicine. But the evening of the 23rd, heading into the 24th; she woke up twice. The first time saying she had a headache and needed her peppermint beadlet; so I did that at 2 am. Then at 4 am, woke up holding her head with both hands almost in tears. I gave her ibuprofen and we went back to sleep. Her brother's had school on Friday, so we drove them in, made it home and she got sick. That was when I looked at her and said we need to call the neurosurgeons office and she agreed. 

We don't live far, thankfully. So we made it quickly, and they evaluated her. She looked great! Guys this is something you need to know about Willow. She doesn't present in shunt failure typically as to what is taught to the doctors. She passed all the neuro tests they gave her, If you were to look at her at that moment in the office with the PA, no one would believe her shunt was not working. With Willow, you have to know her nuances, you need to see that emotional changes are a part of her shunt failure, there is only a slightly tired Willow, when honestly this girl is NEVER tired. Thankfully we have a team who is tuned into that. We were sent to MRI. 

Once we came back from MRI, we were met with the neurosurgeon himself, and that will always tell you - you are being admitted.  So, she was admitted around noon on Friday the 24th, and surgery started at 4 pm. She was done by 6 pm, and I was able to go back with her, and we were back in her room by 7 pm. Surgery went well. We learned there are some new things we need to be aware of as surgeries progress in the future. Nothing that I need to go into now, just things we need to be aware of for future surgical scars.

Saturday, she started the day doing well. Working on art projects, eating and enjoying Frozen too many times for me to admit. We had a post op MRI Saturday, but it showed not much change in the ventricle size. So, they changed the shunt setting; but this means we stay a few extra days. By evening though, she said she is having headaches again. We skip meds, to see how bad they are getting. She was able to sleep through the night, and Sunday seemed better. But her next MRI was Monday morning. She played Sunday cautiously. She seemed very well, but we didn't want to get our hopes too high. Monday morning came and saw that the MRI was indeed good. Her ventricles were now quite small; but she was doing great. She was discharged and home again on Monday afternoon.

She was home with me on Tuesday just to keep an extra eye on her, then off to school Wednesday and Thursday before officially starting spring break last Friday. :)
She still has on and off headaches, which is what started this whole process of surgery #17, but we are praying that it is all weather related, as this is a cold, wet, spring break.

So, in Willow fashion I will end the post with a few pictures from this last trip.
Amanda & Orion waiting for dad as Willow got checked in. 

Pre Surgery, getting more sick as time was passing. 

New incision. :( 

Saturday she was able to sit up and do some art. 

This is how Willow conquers Hydrocephalus. 


Popular posts from this blog

2018 is here...

Summer 2018

National Hydrocephalus Awareness Month