MRI results

Meagan had her follow up appointment today with her Neurosurgeon, Dr. R.  He came in and greeted us as usual, and then said hi to Meagan.  He calls Meagan his "little sweetie".. I love that.

He pulled up Meagan's MRI and started to go over the details.

He said first of all, her shunt is working great.  He said that her CSF gathered in her brain is less and that's a good thing. He was happy with the brain tissue that has fluffed out so far and is hoping that trend continues.

Now for the other issues:

1. New fluid outside the brain - Meagan has a good bit of fluid gathering outside her brain.  Dr. R said along with her sutures overlapping, this is something that while not desirable, is not unexpected.  He said unfortunately, with the Hydrocephalus, the main goal is to relieve brain tissue and salvage as much healthy tissue as possible - so by draining away the ventricular fluid it can leave room for fluid to gather elsewhere if it beats the brain's growth to fill up the space.  He said, again, that this is something he wants to watch. He doesn't want the fluid to build up too much on the outside of her brain, and also doesn't want her sutures to fuse - thereby throwing her into another surgery.   He said because of this, with our permission, he would like to set her shunt back up to a "2" from where it is currently (1.5).  This is hopefully going to reduce the fluid on the outside, and also seperate her sutures a bit to avoid fusion.  He said he was aware that last time she didn't tolerate this change so well, but, he's hopeful that perhaps now, a little older, she will tolerate it ok.  He said if for some reason the fluid starts bulging again or she stops eating and is fussy like before to just call and he'll be happy to see her right away and turn it back to 1.5.


2.  Fluid in posterior fossa:  Meagan's fluid is still present in her posterior fossa - and it is still pressing her cerebellum into her spinal canal. This is known as a Chiari Malformation.  Not unheard of in babies with Hydrocephalus.  He said something similar to his speech about the other issues... he doesn't want to "tip the apple cart" at this time. He said if, again, the fluid grew substantially on a future scan, or, Meagan started to show clinical symptoms of the fluid impacting her spinal column (ie: dizziness, balance issues, motor issues) as she grows and starts to tackle certain skills, he would again take a look at it, and consider draining it.  He said he doesn't necessarily drain ALL unnecessary fluid from the brain of a patient - only fluid that he sees is impeding brain growth and/or impacting the daily life of the patient.



Dr. R explained everything fully to us.  Honestly, it is hard to gain "closure" when so much is "watch and see"... BUT.. I do appreciate his approach.  Meagan is doing ok - her brain tissue is fluffing out - her fluid is leaving.  Have other problems arisen? Yes.  But I love that Dr. R isn't "trigger happy" either.  He told me today "I treat the patient, not the conditions." .... So when her new issues or fluid start impacting her brain growth or her clinical abilities, then treatment will be considered.  Until that point, I understand why he wants to just "watch and see."  I appreciate the fact that he is worried about Meagan as a person, and doesn't see her as "hydrocephalus, extra-axial fluid, seizures, and at risk for cranial synostosis"

He also said that since her seizures are a new thing, and not 100% under control yet, he would hate to put her in another surgery, and then have those get completely messed up again as well.  He said we will watch these other developments closely and if ANYTHING changes from our observance to call him right away.  He will continue to do his part in managing her shunt and her scans to advise from the professional view.

It's really hard being a Hydro parent.  Because everything that comes with Hydro or new problems that develop often have the same "prognosis" or "action" as the original Hydrocephalus - which is .. "watch and see"   I love Dr. R for going through everything for us.  I love him treating Meagan the person and not Meagan made up of 5 different medical issues.  I love that he is taking the approach he is -- as parents, we get so worried about our kids, sometimes we fail to see the big picture.  And today Dr. R reminded me that because Hydrocephalus is so uncertain, we have to always look at the big picture.  I love that he literally said "if it ain't broke, don't fix it."  I think I just overall love Dr. R.

So we sit in another pool of waiting, watching, and seeing what happens.  But I do know that Meagan is in GREAT hands in Dr. R.  I trust his opinion and am so thankful he is on Meagan's side.  I'm appreciative of his attentiveness to her new issues, and I trust that he will watch them closely.

As parents, we love our children.  It's a natural tendency.  But as a mom of Meagan, I do have to say, I love Dr. R too.   Without him, his expertise, or his treatment approach of Meagan, my love for her wouldn't matter because she wouldn't be here. When you have someone you rely on to keep your child ALIVE, you have to love them....because your child's life and well being is literally in their hands.  Dr. R could have easily advocated for other surgeries to drain the fluid..... but after his explanation today, I know he is thinking about the big picture.  I understand that he, too, loves Meagan the person... and wants her to be the best Meagan she can be.

So with that:

Dear Dr. R,

Thank you for being the best YOU can be.  I'm not going to lie....the "watch and see" will be tough,.... but with my love for Meagan, your obvious love for Meagan, and our family's love for you, I'm confident we can wade through these issues and take appropriate action when needed.