A Recap of Our Time Spent at Children's Hospital Colorado.
Last week was not what we hoped, but we trust in God’s sovereignty. For those sweet friends and loved ones who have been praying and wishing us warmly, I wanted to let you know how our trip to Children’s Hospital Colorado went.
We checked in at the hospital at 7:30 Monday morning. By 9:30 they had hooked her up to the EEG machine so they could watch for seizure activity in her brain waves.
Micaela got used to her new head gear quicker than Jovani and I expected. It was actually a neat set up. They hooked all the electrodes to her scalp with a conducting “goop” and then glued gauze on top of that. Afterwards, they wrapped her head and tucked the wires in gauze before sticking the EEG box into a little backpack. The box had such a long cord that as long as she kept her backpack on, she was able to roam around the room. Thank goodness for that! She is such a busy girl, I was worried I would have to keep her confined to sitting most the time, but she was able to do her thing.
Jovani and I took shifts. The first night he went back to the hotel to sleep. The doctors put Micaela on half her normal dose of medicine. As soon as Micaela went to sleep I slept as well. Occasionally I would pop my head up to look at the monitors showing her vitals to be normal. We weren’t surprised when she didn’t seize that night.
Tuesday they took her off meds completely. It was my turn to sleep at the hotel. With a lot of prayer I settled into sleep. Jovani and I both felt like the seizure would happen soon.
At 5:30am, Wednesday morning, she went into a seizure. They were on their third medicine trying to stop it before they decided to intubate her (give her a breathing tube) so they could push even more medicine without compromising her respiration. In all, the seizure lasted 4 hours.
As scary as that was, the neurologists were disappointed to find that the seizure had come from the unexpected side of her brain.
Micaela’s seizures usually cause jerking and twitching on the left side of her body. Those seizures come from the right side of her brain. A handful of times we’ve seen her go into a seizure where she was stiff with a fixed gaze to the left. The doctors got to witness her rare seizure, the stiff or “catatonic” seizure and it came from the left side of her brain. With Micaela’s brain injury from birth, the neurosurgeon doesn’t want to take out parts of her brain from both sides. It could permanently compromise her mobility and other areas of her daily function.
However, God is amazing. If she had went into her normal seizure of jerking and twitching, the doctors might have never seen the seizure activity on the other side of her brain. We would have qualified for the surgery, had part of her brain removed, and then still had dangerous seizures. How great is our God?!
Micaela recovered 36 hours quicker than the doctors predicted. They removed her breathing tube by about 8pm and I spent Wednesday night trying to keep her quiet and calm so her IV would stay attached.
Our care at Children’s Hospital Colorado was exceptional. I loved the time multiple doctors and specialists took with us. They even came by and made plans for next-steps for our seizure care. We will be getting a VNS implanted near the end of the month. Who knows, it might be exactly what our little girl has needed all along. (If you want to read about a VNS click here.)
We were discharged Friday morning. Too tired to drive, but sick of being in tiny enclosed spaces we walked through Bass Pro Shop and went out to eat dinner that wasn’t served with paper napkins.
Saturday Adela was super excited to have us back, but maybe not as excited as we were to have her. She loved every minute she spent with her grandpa and Abuelos while we were gone.
Sometimes things don’t work out like we want, but our Pastor gave me a challenge a few weeks ago, he said it was okay not to pretend that everything was fine. He said that our joy can be found in finding all the ways God provides us. I have taken that challenge and been blessed to see God move in our lives this past month.
The adventure will continue. Today we are home—safe and happy—and that is enough.
I just wonder if I will ever get all that glue washed out of her hair.
Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows.
If you are going through a hard time, know that you don’t have to pretend to be okay. Find joy in God’s provision. He always stays close.
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