More Migraine, More Hospital

Samuel has had another migraine episode. Samuel was diagnosed with chronic migraine last November, but we thought we had them under control. Unfortunately, Sam seems to be a kid who can’t kick them once he gets them. Since last Monday, when Sam reported a terrible migraine and left school, we have done over the counter meds, prescription meds, an IV cocktail infusion and then from Friday until today he was in the hospital for Dhe doses which can only be done in the hospital. The neurologist wanted us in on Wednesday, but no bed became available until Friday because of flu season.
We checked in on Friday afternoon and were in the same wing as last time. We really love this hospital and feel very lucky to be able to have it nearby. It is beautiful. The child life people there are incredible. They had the sweetest thing where they gave all the patients flashlights during the day and then that night the Girl Scouts stood outside and flashed their lights while the patients did the same inside. Made me tear up. Another day a bunch of young hockey men showed up and handed out teddy bears to every kid there, patient or not.
Davis and Michael spent Saturday with us, hanging in the room, watching Lord of the Rings (Sam and Davis finished the books) and just being together. They left Saturday evening and Sam I settled in for dose 4. Unfortunately, the Dhe that Sam goes into the hospital to receive is extremely painful and hard on his veins. This time his veins weren’t able to handle the drug and we had to stop 3 doses into the 8 we were hoping for. We tried a new IV line and tried again this morning, but it was a no go. He was in so much pain and we decided that the pain of the IV negated the progress in his head. His headache IS improved from the three doses, but still not down to the every day level where he can happily function. They went ahead and discharged us and sent us home. I am very disheartened. I keep researching low altitude, airport hub, great public school locations to move to. 'Cause that's what I do. Plus my show opens on Wednesday and I haven't slept properly in three days.
We have an appointment tomorrow morning at 9:45AM with his pediatric neurologist to talk about options. We may have to re-admit him with a pic line. Or we may be able to dose him at home. Or he may wake up without a headache and we can send him back to school on Tuesday afternoon!
Either way, this shows us that these episodes may be recurrent and extremely hard to treat. The neurology team at the children’s hospital emphasized that we can only treat 50% of his symptoms with medicines and the other 50% is on us to reduce stress and stressors. In his neurology interviews he kept emphasizing that school and math are really stressful for him right now. I think he got behind last semester and still just hasn’t managed to catch up.
I also need to be more vigilant about him wearing his glasses and hat and reducing lights and noise as much as possible.
We will see what his regular neurologists suggests tomorrow. Stay tuned and send us well wishes.