Wednesday, September 19, 2012
Through all the pain Rowan has been enduring over the past few months with these headaches, neck pain and other neurological issues caused by his Chiari, he told us what was hurting, described his symptoms in detail, but never, not once, actually complained or asked "why me?". He is just 6 years old. We would understand it, even expect it from someone his age, experiencing his level of pain. Then, over a week straight in the Pediatric Intensive Care Unit, two neurosurgeries within 6 days, anesthesia, post-op pain and nausea, a ridiculous amount of pain medication, and he still has not once actually complained. Not only has Rowan not complained, let me tell you some of the unbelievably selfless words that have come out of his mouth... When someone here was telling me that it must be hard for me, sleeping in a chair for a week, being away from the other kids and Brian at home, Rowan looked sad and said "I guess that's really my fault, I'm the one who is needing her to be here with me."
Thursday, September 13, 2012
So as most of you know, Rowan is back in the Pediatric Intensive Care Unit at the hospital once again. Last week's brain mri and flow study showed the continued presence of a large Chiari malformation with blocked cerebral spinal fluid. He had a scheduled shunt revision/exporation surgery yesterday to try to rule out the shunt as the cause of his extreme headaches, neck pain, and other neuro symptoms. That did not end up being the apparent cause however, so Rowan is scheduled to go back into the operating room Monday for a more aggressive Chiari surgery which will include the surgeons cutting into the covering of his brain and sewing a dura patch into the lining in an effort to relieve pressure from the Chiari and open up the flow of csf once again. This all sounds pretty heavy, right? Especially for a little boy who just turned 6 years old. And even more so for a little boy for whom this makes surgery number 52 and number 53. Well not for Rowan. For Rowan it's as simple as "Which new pajamas will I wear for surgery Mommy?" This is a picture of Rowan the morning of this week's shunt surgery. He woke up happy as could be because he was wearing hand-me-down pajama pants from his big brother that he had never worn before. He said "These pajamas will give me all the love I need for surgery!"