We met with Polly’s surgeon
and I saw the inside of my daughter’s brain on a computer monitor.
Yesterday, Polly, Sergei and I trekked off to Children’s Memorial Outpatient Clinic on Clark Street to meet with Dr. Alden, Polly’s Neurosurgeon. His full name is Tord Alden, which sounds really smart to me. A good sign.
I was surprised that Polly’s blood vessels are quite thin on both sides of her brain. Her Moyamoya is more advanced than I thought it would be. The angiogram took pictures of how the blood actually flows for Polly in her head and unfortunately, it’s not flowing much. Dr. Alden also pointed out three or four spots on each side of her brain that had gray clouds. These areas are from past strokes. Unbelievable! Our baby has had multiple strokes and we didn’t even know.
It breaks my heart. As a mom I expect to know when something is wrong with my kid. I count on that internal mother intuition that usually clues me in on ear infections or when someone is about to puke.
But I didn’t catch the strokes…
Dr. Alden talked us through the surgery, an indirect by-pass. I’m not going to act like I completely understand his explanation but I think he told us that they will cut out a piece of her skull, find a large artery and actually place it on her brain in order to create new blood flow. Again, referring to Dr. Scott’s (out of Boston Children’s Hospital) explanation:
We separate this artery from the tissues around it, keeping blood flowing through it. We open up a window of bone beneath the artery, and then use a microscope to carefully open all of the coverings of the brain right down to the brain surface. The artery is then placed directly onto the brain, and the tissues around its walls are sewn with tiny sutures to the brain surface to keep it in contact with the brain. Then the bone window is replaced securely, and the skin incision closed. In some patients, we may also place an extra small hole (a “burr hole”) in the skull away from the first incision, and at this hole we also make tiny openings in all of the coverings of the brain before closing the incision.
Dr. Alden at Children’s prefers to do each side of the brain separately, a month apart. He also said it is imperative for us to wait four to six weeks after Polly’s stroke for the first surgery. Her brain needs to do what it will to heal itself to diminish chances of bleeding and infection during the procedure.
The first surgery is scheduled for Friday, December 11th. There will be about an hour and a half of cutting, add in anesthesia and waking up etc… we’re looking at 3 hours for the whole process. Polly will definitely spend the first night in ICU and afterwards she’ll either be sent to another floor to recover or if she is doing really well, she may be able to go home the next day (WOW!).
So here is where I’m at personally with all of this:
Firstly, I thank God that even though Polly has had strokes in the past, he has kept her functioning well, without any residual damage from her little body’s upheaval to date. Her most recent stroke (the one I saw) left the most damage to her right side (likewise, it occurred on the left side of her brain) and she is recovering beautifully. If anything, the stroke has knocked a bit more of a sense of humor and sassiness in our girl. And we’ll take it! Someone reminded me today that God loves Polly even more than we do.
Secondly, of course, I’m scared. My time is spent breathing in and out prayers for Polly by day and on my knees next to her bed at night. Every time I hear a thud or a cry my heart sinks. I guess it’s human nature (at least for a mother of a child with special needs) to expect the other shoe to drop, for her to have another stroke pushing this whole process back or even worse, really messing her up. It’s exhausting, honestly. I’m forgetting to RSVP for birthday parties for Lainie and Zo and there is a constant nagging thought in the back of my head that I’m forgetting something. This morning I swiffered the dinning room floor with a baby wet-wipe and was thrilled that enough energy was mustered to clean at all. I’m not doing anything well and yet, by the grace of God, time is going by, like it always does.
Thirdly I’m spurred on to live day by day, ticking dates off on the calendar in my mind; another day Polly gets through without incident; a gift. This strength is gathered from my relationship with Christ, the Bible, my rather funny and very attentive husband, eskimo kisses from Lainie, Zo and Polly, warm smiles and chuckles from Evie.
Strength and encouragment comes from the most unexpected places as well. A mom from Zoya’s class emailed this morning. She excused my lack of RSVP-ness and went a step further inviting Elaina to her daughter’s party Saturday which will certainly break up our weekend. Sergei will be gone for his back-to-back six hour class Friday and Saturday on Patristics.
This kind of stuff keeps happening…a meal or a bouquet of flowers on my doorstep, friends on our street inviting my older kids over for playdates. Therapists making up missed appointments and ladies from church come over and watch our kids so Serg and I can go to Polly’s appointments together pro buno, even though they could use the money (couldn’t we all?) Emails and facebook comments, people (both friends and strangers) join their names to so very many in prayer for Polly during this challenge.
And this morning as I picked up Polly from preschool a little girl walked up and handed us a birthday invitation. The little girl’s mother and I locked eyes and before I realized I was talking I thanked her and said,
“When she was born I wondered if she’d get invited to birthday parties…this is her first one, and you guys are going in her baby book.”
The mother started to cry, Polly’s loving teacher Ms. Baba (Barbara) had tears in her eyes and ten little preschoolers continued to run circles around us completely unaware that God’s grace was happening right there, right then. He was showing me once again, His love and care.
We’re here and today, thanks be to God, we are alright.