Brian did a great job of gathering all of my hospital necessities and packing a bag for me in case we had an overnight or extended hospital stay...which we were unfortunately anticipating. We were excited we were being sent home, but at the same time a little terrified that he would have another episode. Having the Valium on hand at home gives us some sense of having a little control in the event this happens again.
There is still no clear reason as to why these seizures began. He did have 3 therapies that morning (they were all trying to make up from missed visits on the ice days). This was the only thing out of his norm, and it is possible to have been his stressor. Not knowing exactly what caused these debilitating seizures makes it extremely difficult to prevent future episodes from occurring. Before we were discharged from the hospital, the doctor gave us a prescription for Valium (similar to what he was given interveniously to stop his seizures). This is a medication that we must keep with us at all times in case of another emergency.
I had to contact his pulmonologist around midnight on Thursday night because Drake's breathing was way too fast. This was not a problem at the hospital, but his doctor determined he was dehydrated from his seizures and needed some extra vent support and supplemental Pedialyte. This was indeed the case and his breathing returned to normal around 3am. His heart rate remained elevated throughout the weekend, but his doctors all expected this based on the length of his seizures. Sunday night was the first night that his heart rate finally reached his normal ranges. Also on Sunday, we had to start Drake on an inhaled antibiotic for a trach infection which he takes through his nebulizer. This is a medication that we keep on hand because trach infections are quite common with tracheostomy patients. Looking back, we are thankful it has been a full 6 months since his last trach infection. This has also caused Drake to need oxygen support. We are hopeful he will be ready to wean off the oxygen in a few days.
Today we traveled to Dallas in the yucky rainy weather for an appointment with Drake's neurologist. Thankfully he called on Friday afternoon and eased my worrying mind. He also moved our appointment up to today rather than the end of this month. I'm pretty sure that he saw us during his lunch break, and that is just one more reason why we really like our neurologist! I had actually thought to video a little of Drake's seizures to show him...sometimes I have moments of clarity. He told us a very long time ago that if we could video any possible seizures, it would be better than us just describing them. This gave him a much clearer picture of what we were dealing with on Thursday. His doctor upped his daily seizure medication dosage and we will check his levels through a blood test in two weeks to make sure he tolerates the changes. For now, we will monitor him closely and see how he handles the changes. Of course, if he continues to have seizures like he had on Thursday, we will have to add a second seizure medication. We are hopeful that will not be necessary.
Kennedy was a trooper last week and today! She handled having emergency personnel in our home like a champ. She said bye to us when we left in the ambulance, and when her daddy arrived home she told him, "mama taking care bubba." She was well behaved for both of our neighbors who took care of her at different times during the afternoon/evening. When I walked in the door Thursday night she said, "Hi, mama. Where's bubba?" I told her daddy was bringing him inside. She then asked, "You take care bubba?" And "Bubba all better?" Yes, baby girl.
I have to admit that I have been living out of that hospital bag that Brian packed me since Thursday. I've been too afraid to unpack it...fearful it will be needed. Every morning and evening I take out the items that I need and then I pack them right back into the bag sitting next to our bathroom door. I know that I need to unpack everything and put the bag away in our closet, but I'm just not ready yet. I will be, but for now I need just a little more time.