YOU CAN CALL IT INTUITION...

By now, Joakim and I simply know when something is not completely right with Jacob. Like yesterday morning when we're exploring the outlet stores in Silverthorne. The suctioning was getting a little bit too intense to be able to actually do some shopping. The suctioning simply takes over what you're doing, and your brain starts thinking about plan B. It varies who will be the party pooper. This time, it was me.
"Hm...maybe we should think about going home tonight instead of tomorrow?"
"I had already started to think the same", says Joakim.
It's always hard for Sarah as we make a change of plan. Vacation plans, weekend plans, party plans - all can vanish very fast in our house.
We decided to not leave until the evening, and enjoy the rest of the day taking turns being with Jacob in the condo. Jacob did better as he could rest on the couch with mommy or daddy. Sarah still got to play in the arcade in Breckenridge and explore the fresh mountain air. Dinner was served in the condo rather than going out to eat.
At 7:30 pm, we were all packed up and the kids were in the car in their PJs. Jacob had gotten all his meds and was hooked up to his night feed. Sarah had her favorite teddy bear and pillow ready for a nap in the car.
We probably hadn't gone for more than 10 minutes, and Jacob started having oculogyrical crises again. It became a race down I-70 back to Denver, which I can't recommend to anyone...We were hoping that with Jacob drifting off to sleep that maybe, maybe they would go away by themselves, but instead we had to do a detour via Children's ER on the way home.
I rushed Jacob in, and completely ignored the line of parents patiently waiting to get to admission. The oculogyrical crises do look like seizures, so within seconds we were back in the trauma unit. Both nurses know Jacob very well, so no questions were asked, simply bringing him back to start Versed again. It's interesting, but I felt a sudden calm as they started to hook Jacob up, and access the medi-port. I realized that I had been nervous all weekend about Jacob's health and being far away from the hospital. I am thinking it might be a while before we try this again.
My dear husband took the night shift in the PICU, and I went home with Sarah to unpack the car and get Sarah in bed much later than we expected.
Tonight, Jacob is still on Versed drip. We're hoping they will shut it off some time tonight. They typically run it for 24 hours. I talked to his neurologist today, and she wants to have another MRI of his brain done. She feels too much is changing for Jacob right now to not have a second look at the brain. In addition to the oculogyrical crises being completely out of control, Jacob has started to have breakthrough seizures again. He had a longer seizure Saturday night, and has short petit mal seizures throughout the day. So, we're also bumping up the dose of his seizure meds and will more aggressively start him on this med that supposedly can help us to prevent the oculogyrical spells.
Tonight, we're hoping for a quiet night in the ICU. Luke is Jacob's nurse again, so we're in good hands. Depending on when the MRI is scheduled, we'll see when we get to go home. We're hoping some time mid-week. At the same time, we're more than anything hoping to not be back this week again. This time, he got a break of 2 days before he was back in the PICU again...
Please send positive thoughts Jacob's way. He needs them.
Thanks, Maria.