Glenn Head

HLHS babies often experience headache and irritability for the first few days and weeks after the second stage surgery. They call it "Glenn Head". Both the blood flow to the lungs and the blood flow to the rest of their body is significantly altered during the Glenn surgery.  Often times, this change in flow and pressures can cause massive headaches as their bodies become used to their newly plumbed heart. We think Declan has been experiencing this. Because although his oxygen saturations have settled in the upper 70's/lower 80's, he has been very irritated.  He started to cry if he lays down, but if we picked him up and cuddled him, he would settle down. Then yesterday, he had to be in a bouncy seat that had to be bounced. Now today, not even that would calm him down. When the doctors initially declined to give him anything, I wanted to say, "here, you hold him for 4 hours while he cries and let me know what you think then". I finally started leaving our door open so they could hear him scream. I thought, "if we are going to suffer, we will ALL suffer"! One nurse commented that his cry sounded like a Velociraptor. The doctors finally had pity and gave him something to calm him down and he almost immediately wen to sleep. He had not slept all day. We felt so bad for the little guy. He would only sleep for 20 minute segments and wake up and cry. This medicine finally helped him crash and fall asleep.   Let's hope this lasts for a bit.