We did get our conference that we wanted and had some plans in place for transfer; but by mid morning it didn't end up mattering
Today, shortly after 11 am, Matthew began having seizures. He would just get over 1 seizure, get a short break and start another. The doctors tried giving him more medication and it didn't work. So the pediatric intensive care doctor came down and started an IV. They gave him more medicine in his IV; with no help. They gave him a third medication, and he still continued to seize. They made the decision to that we should go back to ICU and start him on a drip of medication that would stop the seizures. He was on this before and it required a ventilator. Well, that put my little poor tired mind into overdrive; and I did what I never thought I would do. I yelled. I told them we COULD NOT do this again. NO ventilator; no ICU. I can't do it all over again. I told them in no uncertain terms that we needed to go to MN now. After the shock wore off on everyone's face (I think they realized I was serious). They called MN right away; but the doctors in MN were unwavering. They did not want him there this weekend. All of the pediatric neurologists were off for the weekend and an adult neurologist was covering. They would be of no help to us. We were stuck. We had two choices. Continue to watch Matthew seize, or sedate him again. I crumpled into a pile of tears. We had no choice. We would go to the ICU. Once of the residents informed me (thank you dear resident for having the intuition to know I didn't fully understand) that sedating him didn't necessarily mean having to put him on the ventilator. I had a ray of hope that he wouldn't be ventilated and that we could get him seizure free.
When we got down to the PICU, the nurses could tell I was super frustrated. I told them what was going on and they immediately kicked into action. They said they would do their best to get us to Minnesota as quickly as they could; but we needed to restabilize Matthew first. The drip was started and within 1 hour he was resting quietly, not having seizures and breathing on his own. PRAISE GOD!!
As we sit here, Matthew is still sleeping comfortably. They are reducing the drip a bit; so we can get the exact dose he needs with the least amount of sedation. We are comfortable with his care FOR NOW. The work to start a transfer will start up again Sunday. I think I am learning a lesson on patience.
We're hoping for a quiet, restful weekend. Thank you for your continued prayers.