It has been a very long, very tiring two days. Bottom line: Scarlett now has a VP shunt.
We were discharged from Stanford Saturday morning. Sunday we spent the day visiting family. I'm so glad we go out a little while we could.
Yesterday we were due back at Stanford for blood work. It took 4 hours to get cleared to leave, as we got trapped waiting for Scarlett to provide a urine sample. First of all, she isn't eating much, so to get any urine, I had to get her to eat in spite of her nausea. Then, I had to actually collect a clean sample of the resulting urine. This is hard enough for an adult (I know - when you are pregnant, they make you give a sample at every appointment. Details aside, it is hard to aim for the cup the further into pregnancy you get...); but to collect a urine sample from a baby is particularly challenging. We use cotton balls in her diaper that are squeezed into a specimen cup. Unfortunately, to catch the cotton before it gets pooped on is harder than one might expect. It requires constant vigilance. But, we eventually did get it and Scarlett checked out well, with her blood counts showing she was ready for chemo.
We had scheduled a quick MRI in Oakland before being admitted for chemo at Stanford, just to check her progress. So, this morning, I planned to wake up early to get us clean, dressed, fed and to Oakland amid the morning commute traffic. The little lady had other plans, as usual, so she woke up an hour before my alarm went off to nurse. So much for the alarm!
The MRI was delayed and took a while to even happen. We then waited in the neurosurgery clinic as her surgeon, who was in another surgery, checked the scan and decided that there had been a change, and it was shunt time. We knew he had anticipated it, but we had hoped to hold out a while longer....but of course Scarlett always has her own plans! So, when they decided to sneak a shunt placement between two other neurosurgeries today, I wasn't too surprised.
The surgery was short and easy. She was awake and alert before we even got to the recovery room. The shunt is placed on the left occipital (rear) part of her head, and leads to a long tube that drains excess cerebral-spinal fluid from her brain to her abdomen where it can be reabsorbed. As far as I know, she will always have the shunt. It will extend as she grows and can be adjusted as needed. It definitely adds a challenge for her, but shouldn't hold her back from doing what she wants when she is older.
The most difficult element of this is that, because she still has symptoms of RSV (a runny nose that makes her sneeze), we are on contact precautions, which means gowns and masks for everyone, including us. This means I have to sleep on the fold-out chair with a paper mask on in a fully-lit PICU. I tried to say I didn't need a mask because I had been exposed to her for two weeks, but "it's the rules." No further discussion for now; I'll try with new doctors tomorrow morning.
We are hoping she is ready for chemo again in a week or two, after a few days in the hospital to recover from the surgery. Good news is that the doctors saw no signs of major tumor growth, so we are still in good shape there. A new resident in the ICU, who didn't see us before, again called her MRI images "impressive"... I think this is a strange way that they try to communicate with us, as though we should be proud of her for having such a massive tumor. I know they don't mean it, but it is surreal to talk about it that way.
It's just another bump in the road.
P.S. - Thank you to Beth Stutzman for the crab quiche! It's taunting us in the freezer until we can eat at home again. Someone asked how to get on the meal schedule; e-mail firstname.lastname@example.org.