surgery update–day 1

thank you to everyone who’s been texting, messaging, and praying us through this day.

i wish i could call you all and explain everything that’s happened, personally, but i’m tired and exhausted, and this will have to do for now. thank you for your concern, though, and know that we feel your love.

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hazel woke up at 2:50am and i nursed her. she couldn’t have anything after 3:30 am anyway. we gave her the medicines and got ready and arrived at DC Children’s National Hospital at 5:30 am for pre-op check-in. we waited and waited and hazel got fussy, so i rocked her to sleep and she napped until we went back in the holding room. the team and Dr. Myseros came around about 7:20am and by 7:30, they were carrying her back to the OR for anesthesia.

now’s when the waiting—the excruciating waiting begins…….there’s a status board in the waiting room and her number kept being blank….7:45, 8:00, 8:45, 9:15…..still blank. finally, we got an update saying that they had officially started the operation at 8:55. we continued to wait (and thankfully had Cindy, Tim, and Jon’s dad, Jack there to distract us and make us laugh). at one point, the head of neurology (who was assisting the surgeon), came out and, excitedly told us that he had helped locate the spot and that his work was done and that they were now taking it out.. this confused us a bit, because we had thought they were going to do the ECOG (EEG on the brain) before and after Dr. Myseros did the resection.

around 11:35am, Dr. Myseros came out and called us back into a private room. he explained that things had not gone exactly to plan. his original plan had been to use the MRI, line it up with her face and then use the computerized wand to pinpoint the exact spot of the cortical dysplasia. however, once he got it all set up and tested the wand, it was about 1 cm off of the actual spot. he couldn’t trust it at all and almost had to shut the whole operation down because he wasn’t sure how to find the spot. it is located really deep into the brain tissue which made it more difficult. he and then neurologist then used a kind of wire with electrodes to find the spot and on the third try found it! (Praise Jesus). they realized then, that the area that was acting abnormally and causing the seizures was larger than they had originally thought and he basically cored a cylinder about 1.5-2 in deep out of the brain tissue. this was a success as far as the surgery and what they are fairly confident is all of the abnormal brain tissue.

now, we are in the Neurological ICU and hazel looks great! (especially compared to Brother when he got out of surgery). she doesn’t have any bandages and very little swelling at this point. the incision is about 2 inches long and they didn’t have to shave much of her hair. she’s moved all of her legs and arms, has the breathing tube removed and the catheter as well. she’s sleepy from the anesthesia and the strong anti-seizure meds that they’ve given her to be sure no seizures occur right now.

we won’t really know if “it worked” until several days, weeks, and maybe even months as it will be a process of weening her off the medicines and then waiting to see how she responds, but will hopefully see improvements and a clean CT Scan tomorrow. we are thankful for the many ways that God has answered our prayers so far and continue to rest in His Peace and Provision.

thank you again for your prayers and encouragement! #prayforbabyhazel

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