Our third child was diagnosed with Ulcerative Colitis on 10/16/06 at the age of 20 months, after being ill much of her life. On 10/2/07, at the age of 32 months, she suffered a non-hemmorragic stroke of the thalami and basal ganglia due to inflammation causing a blockage in the vein of galen (which supplies blood this area). If you are familiar with how the brain functions (we were not, prior to this) you’ll know that this area of the brain routes signals from the brain to the body. So basically, with numerous infarctions (areas of dead brain tissue) in this area, we were told that it was very possible that Katie’s brain was otherwise functioning normally despite quite a bit of edema in the surrounding areas of her brain, but that she was “trapped” and not able to move or communicate.
An EEG confirmed this, showing largely normal brain function in the other areas of her brain. During her EEG, the technician asked us to call her name and talk to her. When we did this, her brain activity went crazy! We were so excited! She knew our voices and she was happy that we were there and talking to her! And she had so much she wanted to say to us, but couldn’t. On the outside, she appeared to be sound asleep, unable to move, talk or respond. She was drooling and the left side of her body was retracted to the left. The doctors tried to gently explain to us that she likely would remain that way, forever. An intern offered to call the chaplain. Though my husband and I had been crying nearly constantly from the beginning of this nightmare, that was the only time I really, really lost it. I told them they were wrong and that Katie was going to recover.
Most of the specialists and intensivists we met during Katie’s stay in room 46 in PCH’s PICU were wonderful. Dr. Cheah, in particular, gave us hope when others told us there was no hope.
The first couple days are a blur of tests, lots of waiting and seemingly endless tears. We asked her doctors to give Katie a regular bed, so one of us could be beside her at all times. We never left the hospital together; we dealt with everything in shifts. Tom slept at the hospital, in Katie’s bed with her. I had to go home and take care of our baby, who was only 13 months and still nursing. My wonderful mom stayed with the kids during the day and Tom would rush home, shower and go to work (two jobs) often not getting back to the hospital until 10pm.
We were incredibly blessed by Katie’s miracle recovery. On day 1 she was completely unresponsive. On day 10, she walked about 30 feet holding on to just her IV pole.
Later that same amazing day, her neurologist (the wonderful and amazing Dr. William Deering) discharged her even though other departments wanted more tests. The decision was the best one anyone could have made because as much progress as Katie made while inpatient, she made even faster progress at home. I’m eternally grateful to Dr. Deering for seeing that Katie was ready to go home and asserting his authority to get her there.
I often wonder what we did to deserve the miracle we were given with Katie’s astounding recovery. I can only think that she still has many things left to do and more lives to touch. Katie has amazed every medical professional familiar with her case. Few obvious signs of her stroke remain today–while her neurologist can spot several deficits, most people who meet her wouldn’t notice any. And while she hasn’t had an easy road since (there have been other hospitalizations for IBD-related issues and she had a feeding tube for about a year) she’s done very, very well and we are extremely proud of her. Our little girl is fighter.