What a day. We had a great day yesterday and even got to hold Christopher before we went home for the night. It was lovely to have him in our arms again. When we came in this morning, we heard that he had a great night and a bunch of his tubes had been removed (his arterial line, his bladder catheter, and the oxygen prongs on his nose.)
Just as we were talking with one of his doctors about the fact that we would likely move out of the PICU to the ward later today, we noticed that Christopher’s oxygen level was dropping. It looked like he had hiccups but within a couple of seconds, we realized he was having a seizure. It lasted about one minute and by the time it was done, there were six doctors and two nurses in the room. They immediately gave him a sedative through his IV. He cried afterwards and then was quite drowsy for a while.
The seizure changed the whole day. There are many, many causes of seizures, so the doctors ordered a pile of tests to see if they could figure out the cause. His bloodwork was all normal. However, the CT scan of his head showed a large stroke. What incredibly devastating news. We spent most of the afternoon reeling from that news. The neurologist came to see him and it became obvious that his left arm wasn’t moving as well as his right. He also had a bit of droopiness to the right side of his face, which did resolve over the course of a few hours.
The doctors then ordered an MRI to look more carefully at his brain and try to sort out the cause of the stroke. There are multiple causes of strokes, but there are two likely scenarios with Christopher. The first is an embolic stroke, which is caused by a clot travelling from somewhere else in the body and getting stuck in a small blood vessel in the brain, blocking off blood flow to part of the brain. In Christopher’s case, the clot would likely be from the surgery on his aorta. The other possibility is that he had an episode of low blood pressure which meant that that part of his brain didn’t get blood flow and was damaged as a result. We know that he had very low blood pressure during the episode after surgery on Wednesday so that was a distinct possibility.
This is where I take off my doctor hat and put on my mom hat and tell you that the four or five hours between getting the (bad) CT result and waiting for the MRI were agonizing. We had visions of a very different life for Christopher than we had anticipated, of lifelong deficits which would really impact him. It was very difficult to wait and wonder.
The MRI took about an hour and a half, as he had to be intubated again and given an anesthetic so he would be perfectly still for the test. It was a long wait.
As soon as it was over, the (wonderful, lovely) neurologist came back and told us the results. First, there is a stroke in the right parietal lobe of his brain, which means that a small part of the brain there is dead and will not recover. However, the part is smaller than we originally thought. It is in a part of the brain that can affect motor function (movement of his left arm and/or leg) and potentially could cause minor learning issues. The neurologist emphasized that babies’ brains are very “plastic,” which means they are essentially soft-wired, unlikely adult brains which are very hard-wired. If adults lose a part of the brain, we can do very little to compensate. However, in a small child’s brain, another part of the brain will often entirely take over the function of the damaged part. So, it is entirely possible that he will have no lasting deficit from this event. Perhaps slightly more likely, he will have some mild deficits such as slightly reduced function in his left arm and maybe leg (although the leg looks fine at the moment), or some minor learning problems. The neurologist said, “I would anticipate him going to a normal school, in normal classes, with a normal course load, and possibly needing a bit of extra help to cope with some minor learning problems.”
So. It looks like the stroke likely happened during the episode after surgery, as fluctuations in blood pressure are usually the reason that a clot breaks off into the bloodstream, and he had major blood pressure fluctuations during that time. Truly, given how serious that episode was, the outcome could have been much worse. And, as strokes go, well…it could be worse. It’s not great, but it’s not catastrophic.
In the short term, they are watching his blood pressure very carefully to make sure he doesn’t throw any more clots to his brain. He can’t have blood thinners due to his recent surgery, so there’s not much else we can do to reduce his risk of further strokes. He will also be watched closely for further seizures and if necessary, they will start him on anti-seizure medication. At the moment, the doctors don’t feel the medication is necessary.
In the longer term, he will be followed by a neurologist (in addition to all his heart doctors) and have frequent assessments to watch for deficits. And he will get physiotherapy and occupational therapy to help him start to work on reprogramming his brain to take over for the damaged area.
And in the very long term, hopefully this will just be a story that he’ll tell to his friends. Hopefully.
"Sorry for making you guys worry today. I'm okay."
Seriously how much more is going to be thrown at this little boy!!!!!! Christopher I have said it before and I will say it again, you are an inspiration to us all. To be able to fight through all that you have and still manage to fight some more, you are an incredible little boy. Nicki and Brad I honestly don't know what to say to you both other than we send all our love and prayers to you. Be strong, take one day at a time, rejoice in those small victories that he is making and believe that one day this will be something that you will look back on and wonder how you managed to get through it. Joyce and Kayleigh.
Posted by: Joyce Speirs | 07/09/2011 at 09:51 PM
Keeping you in my thoughts and prayers.
Posted by: Genevieve Smock | 07/09/2011 at 10:29 PM
Nicki and Brad, I know we can't say anything to make you guys feel better at this point, but seriously (and I know Nicole the doctor part of you knows this to be true) your neurologist is absolutely right about babies' brains being plastic. I work every single day with adults and the elderly who have had neurological events and most of them go on to make meaningful recoveries.... Christopher might indeed have a long road of recovery ahead, but that's the good thing about it, he'll have a long road.... again, thoughts and lots of prayers are with you.
Julie S.
Posted by: Julie Savage | 07/10/2011 at 12:57 AM
Oh dear! I'm so very sorry Nikki and Brad!! I've been closely following your story as soon as I heard it from my friend Jackie Flagler. I've been praying fir your family and all the docs and nurses who are caring for your little Christopher! Kids brains are amazingly good at rewiring and that is my hope that he'll have no lasting affects from the stroke.
I'm so very sorry that you are all going through this but it sounds like God picked a very special, capable, loving, patient and kind family to raise His little Christopher in!!
May God bless you and keep you always in the palm of His hand!
Lisa
Posted by: Lisa Gozzard | 07/10/2011 at 01:44 PM
I'm planning on this being an interesting story to tell his friends. Continuing the prayers for you all.
Posted by: Farandolae | 07/10/2011 at 01:53 PM
Hello...stranger friends.
We are friends of Elaine (Kingston)..who shared your story. Just to let you know we are sending lots of Positive Energy & Prayers your way. He's a beautiful baby...takes after his gorgeous big sister!
Just looking in those beautiful bright eyes we know he's a Warrior!
Take of care each other and we'll keep on sending Prayers!
Denise, Peg, and Micha
Kingston, ON
Posted by: Dee Light | 07/10/2011 at 08:24 PM
What a strong little man, ...and whole family for that matter! There are a bunch of prayers and positive energy being sent your way. I'm so sorry that all this is going on. Stay positive, be positive! oxox
Posted by: Erika Henderson | 07/10/2011 at 09:45 PM