I cannot say enough wonderful things about the nurses at Sick Kids hospital. I cannot. Until my dying breath I will sing their praises.
When we arrived there was a team of about 15 people at the ready to care for my sweet boy. Doctors, cardiologists, neurologists, infectious disease specialists. There was also a team of 2 or 3 ladies who came to care for me as well. One of them explained to me who everyone was and what they were doing. Another made sure I had plenty of Kleenex and water. One more showed up later to take my older son to the play centre while my husband and I waited with our son and spoke to the doctors.
Within seconds of arriving, there were X-rays, ultrasounds, blood work, catheters, TPN, IV fluids, antibiotics, antivirals, a lumbar puncture and god knows what else. All the while Charlie continued to seize. With each seizure more medications were given. When max dose on one was reached a new one was added to the mix. They told us he might stop breathing and to be prepared for him being ventilated if that occurred.
I sat there in shock. We’d hoped to avoid doctors and hospitals this time around. We thought our baby was healthy. There was nothing that I could do. I felt beyond hopeless. I had no idea what was happening.
This couldn’t be happening.
I couldn’t breathe.
This wasn’t happening.
I cannot breathe.
Once Charlie was stable they moved him up to the NICU, where he was kept in isolation for 48 hours. After that he was moved into what we affectionately called gen pop.
Over the weekend staff worked to keep Charlie’s seizures under control, and ran a mountain of tests. He had a 48-hour video EEG. Infectious disease screening. Metabolic screening. All sorts of screening. He had an MRI late Sunday, which we were told would be one of the best tools for telling us what was happening.
All this time he didn’t cry. Didn’t open his eyes. Didn’t respond to us. We went home each night with empty arms. I think the ultimate cruelty in this life is for a mother to not be able to hold her baby. There are no words for that level of emptiness in your heart.
We had no idea what to think, but we’d know more on Monday once the doctor teams were back in, and as the test results slowly started coming in, it painted a bleaker picture than any of us could have imagined.