I really don’t even know where to start. I think I knew deep down we would have to do this again, but I was really hoping our trip back to Boston would be fun. Only fun. I am so glad we were able to come up on Friday. The kids had another great time at Santa’s Village in New Hampshire. We stayed in Portland, Maine again on Saturday, which also was as fabulous as last time. My favorite city by the sea!
We had an early MRI this morning and then a follow-up with Dr. Warf at 11. I know he was just as upset to tell me, as I was to hear, that her ETV hole has closed up. I will try and explain this as best I can. When we first met with Dr. Warf he explained that if an ETV fails then the next step is a VP shunt (tubing in the brain that drains the fluid into the belly). But, in Korie’s case her ETV didn’t fail immediately and she is not having any dangerous symptoms as she was before. Her ventricles don’t look alarmingly big (big enough though that he thinks it is possibly giving her a headache resulting in the squinty eyes). She does have another very large syrinx extending the length of her spine. The syrinx is what needs intervention. So he gave us three options; go home and have a VP shunt placed, stay here and place the VP shunt or try a revision of the ETV. Since we know the ETV will work when the hole is open, we know this because all the fluid drained off her spine after the ETV in June, I chose to try the ETV again. I know it’s another brain surgery, but a shunt is too. I know there are some who will question my decision to do this again since people live with VP shunts everyday, but here are my reasons. First, if Korie would have had a VP shunt placed to begin with it is more than reasonable to say she would have already had a revision done on it, or would in the next six months. Statistics show they fail at least once within the first year. Maybe it’s not the same but I look at it like this, another surgery was probably in our future again anyway. Second, for reasons unknown a VP shunt has a much better success rate after an ETV has been attempted, regardless of how many times. Third, Dr. Warf said when ETVs fail because of the hole closing up rather than the body not adapting to it, it is a much higher success rate when attempted again. He said it is likely just a thin membrane of scar tissue covering it that can be easily removed. Fourth, an ETV revision is a much simpler and shorter procedure, with less risks even, than placing a VP shunt. Fifth, and most important, a chance at life without a foreign object in her brain. So, let’s try it again!
We have already been admitted to the hospital. Since she is an add on we won’t know what time surgery will be until tomorrow.
I am already missing my big kids. They are at the hotel next door for tonight and will have to fly home tomorrow, as we had originally planned to do together. Dr. Warf says he feels comfortable letting us go home earlier this time than last. Hopefully, by the first of next week.
You know it’s coming, so here it is…prayer requests. Please pray for Korie and Dr Warf during surgery tomorrow. Pray for safe travels for Michael and the kids. Pray for me, for strength. Every time I think I just can’t do this again, watching Korie go through another surgery or being away from my kids, there The Lord is to lift me up and strengthen me. He has never failed me. Please pray for a restful night for us. Boston Children’s is full to capacity. Apparently that nasty respiratory virus is going around. We are in a shared room. If the mom and dad aren’t arguing and fighting with each other then their baby girl is crying. And Korie is a sympathy crier! I need sleep and so does she.
Thank you for all the prayers and well wishes already. I will update sometime tomorrow after surgery.