Thursday, June 4, 2015

Updates on the noggin

A lot has been happening lately, so I thought an update was in order...

Abby had a 3D CT scan done in the middle of May as a follow-up to her cranial surgery back in September. With some creative soothing and quick-thinking by Jameson, we were able to accomplish this unsedated, woohoo! The scan was to determine how the skull bones were healing post-op, if there was any re-fusion of the sutures, etc. We would be following up with her neurosurgeon a couple weeks later.

Thanks to MyChart, we were able to see the radiologist's report fairly quickly, and while we aren't neurosurgeons, we knew that things didn't sound overly awesome. There was evidence of possible fusion of both coronal sutures, as well as a big, scary word: hydrocephalus. Basically, hydrocephalus involves a buildup of fluid in the brain ventricles that can lead to increased intracranial pressure (which can cause brain damage). We sort of expected the neurosurgeon to call us in right away for an emergency surgery of some sort, like he did last time, but a few days went by with no word.

We went ahead and called neurosurgery to get their thoughts, since consulting Dr. Google had been rather fruitless, but they weren't confident in the accuracy of the CT results and recommended that we get Abby in for a sedated MRI to determine what exactly was problematic and what just required watching - for Abby, sedation means general anesthesia. After some scheduling complications, her MRI is now set for the morning of June 17th with cardiology monitoring her for the rest of the day. If the MRI suggests increased ICP, neurosurgery will need to place a VP shunt within the week to drain the excess fluid. We're really really hoping this won't be necessary.

At her neurosurgery appointment, which was this past Tuesday, we were encouraged to hear that re-fusion of only the right coronal suture is suspect, and that depending on how helmet therapy goes over the next couple of months, she may not need another craniectomy (surgery for craniosynostosis). 

Speaking of helmets...
At the end of May, Abby was fitted for her second helmet, having solidly outgrown the first. I put all of my limited craftiness into decorating the new helmet, which turned out pretty cute, if I do say so myself. Sadly, neurosurgery wants her in a DIFFERENT kind of helmet this time, so back to the orthotist we went today, to get her head scanned yet again. Hopefully we'll receive the new helmet and get back on track next week.

Abby, looking like an unimpressed, but adorable little garden gnome at her scan today:

Bye bye pretty helmet. 

So, that's where we are. Despite Abby having another cold, her behavior does not suggest ICP, so we're holding out hope that the results from the MRI will be positive. 

I was looking through old pictures the other day and thought it would be fun to show you how great her head is looking these days. I barely remember it looking the way it did pre-suturectomy and am amazed at the change since September.


1 comment:

  1. Love those then/now photos! Such amazing progress. We'll be thinking good thoughts for Abby's MRI results!