Fall 2013

Fall 2013

Saturday, September 8, 2012

Post-op visit and a day off

Maia actually got to go to her first post-op visit with Dr. D on Friday. If you remember, the day of her previous scheduled post-op follow up ended with Maia in surgery for another shunt revision. She did not have an MRI prior to this appointment, so maybe that made a difference - lol!

Dr. D was pleased with how Maia's incision looks. I don't remember if I blogged about this, but we had spent a Sunday afternoon two weeks ago in the ED because she just was not acting right and was running a temp. At that time, a head CT was performed. Dr. D reviewed the results of that and said that the shunt tip is definitely in the ventricle. The size of the ventricles is not much different than prior to the revision which leads him to believe that the previous shunt was draining at least some of the excess fluid from Maia's brain. I've been concerned about one of the burr holes and asked Dr. D to look at that. It seemed like it was getting bigger. I've been told that this "can't" happen, but my concern was that there may be infection or something eating at the bone. Anyway, Dr. D was not too worried about it. Unfortunately, these holes in Maia's skull will never fill in or heal. Right now, the skin is very thin over the holes and Dr. D hopes that this skin will thicken over time. We asked if there was any type of routine surveillance which should be done to ensure that Maia doesn't have issues with her shunt in the future. We have been told repeatedly that we will see signs that it is not working. And this is one of our biggest areas of frustration. Maia has never had any of the "typical" signs - with any of her shunt malfunctions. Dr. D was empathetic, but told us that the risk of performing head CTs regularly is greater than the risk of malfunction. There is the potential for adverse effects to her brain with frequent CT scans. So, this really makes Mark and I feel like we are in a difficult situation. We absolutely don't want Maia to go through any unnecessary tests and we don't want to be the hypochondriac parents who are running to the doctor for every little thing (believe me, we both tend to go to the doctor only if a limb is missing or something similar - lol), but on the other hand... we don't ever want a repeat of the past four months. We want to advocate for Maia and ensure that we are doing everything possible in caring for her. I can't speak for Mark, but it makes me feel so vulnerable for our warrior girl.

Maia is a bit of a challenge. No, not every fever or irritable episode is a shunt issue. But, they also can't be just dismissed as a self-limiting thing. There is no easy answer. And Dr. D acknowledged that. He will continue to follow her closely. His biggest concern at this time would be infection (most likely to happen in the first six months following revision) and plans to see Maia back in about a month. So, that's where things are at for now. Mark and I both like Dr. D. He doesn't make us feel like he's half-way out the door when we still have questions. He seems to be very skilled, but also has good interpersonal skills as well. We've heard positive feedback about him from others so we are happy that Dr. D will be following Maia.

Saturday has been a pretty low-key day. Mark had some shingling work to do. The kids and I spent some time at the park and had a picnic. It was nice to just relax a bit, think we need a few more days like that. Maybe soon...

1 comment:

  1. Hi Maia

    My name is Jenna. You are a brave courageous fighter. you are a special miracle from god, a gift from above, earthly angel,and you are a smilen hero. You are full of happiness, life, smiles, joy, fun,love, and spunk.

    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

    I wrote this poem

    Each of us are Special

    Each of us different,

    No one is the same

    Each of are us are unique in our own way,

    Those of us who have challenges, we smile through our day.

    Those who of us who have challenges, we smile through our day.

    It doesn't matter what others say

    we are special anyway.

    What is forty feet and sings? the school chior


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