shunt life

image.jpeg It's wild to think that a week ago we were in the PICU and now we're home, trying to settle back into routine. I think the mental and physical exhaustion has finally caught up with us. However we are inspired to push forward through each act of kindness. This tired mama is particularly grateful for your meals right about now!

Shea had a great weekend consisting of laughing out loud for the first time and removing his bandage. Thank you auntie Amanda for coming to the rescue for this! Pieter and I weren't terribly excited (as you can imagine) about the idea that we had to remove it ourselves and see what damage was done. Grateful for friends who are more like family, and in this case one who happens to be surgical RN.


We had our first follow up with Dr. Muhonen and Shea is looking good! He had another ultrasound done which showed that the fluid is being drained and on its way to being at the appropriate levels which is all we can ask for. The doctor brought up several important reminders for us as we establish our new normal on how to best care for our little man.

The most important reminder is the understanding of how critical the 3 weeks following surgery are in looking for signs of of infection (internally and externally). Internally a major sign of shunt failure is a fever. In order to determine the fever's source, the doctor would have to tap into the fluid (=needle+Shea's head). That said, we are doing our best to stay away from large crowds and of course keep up the hand hygiene. This will get better once we get past the next few weeks, but will always be on our radar. Externally, the surgical site is at risk of infection. The doctor was quick to mention an increased risk of this if exposed to pets (i.e. petting a dog then touching Shea or dog licking his wound). I think it's safe to say Pieter and I will hold off on getting a dog anytime in the near future!

Dr. Muhonen educated us on how the shunt operates in our baby's head. The shunt flow rates are controlled externally through a magnetic dial that simply is applied externally over Shea's head... Incredible. The one complication on day to day life is keeping our little man free of magnetic fields and therefore free of adjusting his shunts flow rate by accident. Our doctor was quick to explain that ipad cases are becomeing an issue here as most iPad cases are magnetically controlled. Many mothers will hold their baby with a shunt and read from an iPad not realizing what is actually occurring. All fun items to look after.

Overall, looking at the big picture, Shea is thriving. He seems happier than ever, which could very well be the truth after relieving some pressure! We await the follow up testing ordered by the genetic specialist but as for the neurosurgeon we better not see him again until next months follow up appointment!

Love and hugs,

Erin, Pieter and Shea