Ethan part 3

We got to the ER at University Hospital on Saturday night and they did a CT scan which showed enlarged ventricles in his head but it was classified as moderate and was not an emergency situation. We finally got home very early Sunday morning and slept until noon.

The next Thursday Ethan had his first appointment with the neurosurgeon. The hospital provided a Chinese interpreter who was able to ask Ethan questions and translate parts of the medical reports that the nannies sent with us. She was able to tell us that when he was seen in December that a CT had showed the hydrocephalus, and that he also had encephalitis and he was given medication to reduce the fluid production as well as an antibiotic for the encephalitis. The neurosurgeon thought that the hydrocephalus was not what was causing his main problems but a tethered spinal cord and scheduled an MRI. He also sent us down to the eye clinic for them to dilate his eyes they said that they could see no indication of pressure behind his eyes from hydrocephalus.

After they read the MRI they scheduled his surgery pretty quickly. He was scheduled for May 16th, less than a month after getting home. The surgery before his went long and after waiting most of the day at the hospital it was postponed until first thing the next day on Thursday.

It lasted around six hours and the neurosurgeon said he had never seen anything that looked that bad. Ethan's original surgery in China was not done well, they did not reconstruct the muscles and he had lots of scar tissue. His spinal cord was tethered to his skin at the scar site. When the skin around the tether was cut, the cord snapped back 3 cm. The surgeon said he had to scrape scar tissue off of his spinal cord.

Recovery was long he had to lay flat for three days to let things heal so that the spinal fluid wouldn't leak. We spent several days in Pediatric Intensive Care where we had wonderful nurses. On Friday they tried to wean him off of the sedation and it did not go well. He was thrashing around trying to get up and to yank all the IVs out. They had to take him back to the full amount of the sedation that they were using, and even add something else on top of it to calm him down. The second night, I was exhausted and hadn't slept much at all the previous night. Ethan kept calling out to Mama and I had to answer him or hold his hand, even while being partially sedated. His nurse brought her charts in and sat next to his bed holding his hand while doing her charts so that I could get a couple of hours of sleep.

During part of this time in PICU Ethan rejected me because I wouldn't take the IVs out or let him get up. Sunday they allowed the head of his bed to be raised. Monday they had him trying to stand up and take a couple of steps. He did not like that at all. He could barely hold himself up standing, let alone take any steps. By the next morning, he was walking down the hall. I was amazed, I think I would've still had the morphine pump going.