Well, we’re home and I want to give an update to all those who are following Mason’s story. This is a picture of him this morning, waiting around for the MRI of his brain and spine. He was coloring in his zoo coloring book. Let me give the short version and the long version of the story.
The Short Version: Mason will have brain surgery next week because his shunt is failing and he has a lot of fluid building up in his brain. The good news is that of all the possibilities that was not the worst. His spinal cord is NOT tethered. Hooray! That means we avoid the risky spine surgery for now.
The LONG Version: This morning Mason and I went to Children’s for a sedated MRI. He needed to be under general anesthesia because the imaging takes upwards of 2 hours and he has to be still. We spent a few hours waiting and playing together.
Mason brought his bear today. I am so glad he finally picked a lovey because we were able to talk through everything that would happen to Mason and bear. They both had blood pressure checked. Mason would take a nap, bear would take a nap. Mason would breathe in a mask, bear tried it first.
I accompanied Mason to the MRI and held him and chatted while the anesthesia was given by mask. While he had a big pouty lip under the mask he didn’t cry, just snuggled bear and I and then his eyes rolled back and he was asleep. My mommy heart was so grateful for that peaceful beginning.
I then went to the surgery waiting room. The plan was simple, I would be told when Mason was finished and what recovery room to go to by the receptionist. I sat, ate the breakfast I had packed, and read a book. About the time I began watching for the receptionist our neurosurgery nurse practitioner appeared and my heart sunk. I wasn’t supposed to see anyone from neurosurgery until next week. I knew then we had surgery coming. She took me to a private room to look at images and explain them.
Mason’s spine looks the same as it did in February. No change is a good thing. She didn’t even need to tell me something was wrong with his brain, it was obvious in looking at the pictures. Large areas of fluid have built up in the ventricles. The shunt is not working, or is only partially working. Time for brain surgery number SEVEN.
Mason is asymptomatic, which means he is not exhibiting the classic signs of shunt failure (headache, vomiting, irritability, excessive sleepiness, high blood pressure, etc). The leg and foot tightening we’ve observed are probably from the shunt failure because pressure in the brain affects the nervous system. Because Mason is comfortable and asymptomatic we are scheduling surgery (instead of doing it right then, which they were considering if he had other symptoms). We have a face to face consultation with our neurosurgeon Tuesday afternoon and the expectation is Mason will have surgery Wednesday. If he begins to be symptomatic before then we will go into surgery a.s.a.p.
Where I’m At Mentally
Relieved and sad at the same time. I am so relieved that his spinal cord is not tethered. That is a huge blessing! I am sad that Mason has to go through yet another shunt revision. This one lasted the longest yet, almost 11 months. I know from experience that one revision may trigger a whole series of them as brain matter is stirred up. (Last fall/winter Mason had 5 shunt revisions in 4 months).
In the mean time we’ll prepare for surgery in several ways. Mason gets a haircut this weekend so it’s less obvious when they shave part of his head in surgery. I’m planning meals for next week so that the children here at home are taken care of while I stay at the hospital for a few days with Mason. Babysitting is being arranged with time off work for Daddy one day and Grandma another day. Homeschool is going on break for a week because we’re flexible like that. Homeschooling year-round (without a traditional 3 months off each summer) means we can take time off when we need to!
I’m peaceful. This is not a surprise to God. He has a plan in place and we just get to learn about it as it plays out.