Thursday, July 20, 2017

Shunt or no shunt???

Today's big question is whether Cydney will need a shunt or not.

We began the morning learning the kidney function and levels were normalizing. That is good news, we just don't know what the cause was or what fixed it.  It was either a lack of free water, a medication she was on, salt being too high or a combination of all. May never know fully, but now kidney specialist are part of the ever growing   team!

MRI was scheduled for afternoon, then at 1000, got a call that there was a spot to fit Cyndey in right then. We had just gotten her settled back in bed from Occupational therapy, and it was time to prepare for transport.

A couple hours later the neurosurgeon called to inform us that her CSF volume is higher than it had been previously although pressures were not too high. We were out with the littles and headed back to hospital to talk with the neurosurgeon.

Nathan and Lily came for a visit, they are so sweet and you can see the concern on their faces for big sis! Nathan put a sticker on Cyndey's hand and says he misses her. Seeing her so sick makes him nervous though. During PT we worked on giving them high fives as well as sitting up.  Left leg remains the strongest, although today we saw some twitching in the right leg.  That is an improvement, and one we are happy to see. We get so excited for those small improvements, and make a big deal.

Today was also working on relieving a bloated and gassy tummy.  Between all the meds, steroids, and what her body has been through it is not surprising. It is hard to see her in pain and to not be able to fix it.

We finally met with the neurosurgeon fellow and tried to get a clearer understanding of the need for shunt, but still have questions to ask the doctor tomorrow morning.

The lumbar puncture is also scheduled for tomorrow. Waiting on these results for oncology to determine a treatment plan.

Everyday we tell her to keep fighting and we are here for her 1000%.

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