Seizures still suck!

All of Jax appointments with his new specialists are exhausting days! Since they don't know him, we have to go through his whole history, which takes forever by itself! It takes us about an hour and a half to get there, and at least two hours coming home, depending on the traffic!

Our neuro appointment was no different. I told him my concerns about these seizures and how more frequent they are getting. He mentioned there was meds that we haven't even tried yet. My neuro in Utah told me there was some more also. He wasn't willing to try them because they are super strong, and with Jax already fragile health, he felt the risk was too great. I told him I prefer to restart the diet, and if it doesn't help, then I'm willing to try a different med. I much prefer the diet to something that could be dangerous to my son.

So here's the plan. He upped one of the meds he's already on, because he wasn't on the max dose. I'm not holding my breath that its going to make any difference. I honestly think we could probably stop all three of his seizure meds and we wouldn't see a change. He wants a 24 hour EEG. I wait for the hospital to call me with the admission day for that. He also talked to the ketogenic diet team to get the labs they need before we start. That will make the process go faster so we don't have to make a whole other appointment with that team. The doc and the attending both agree that we need to get these under control before we get to another bad place. He performed for them by having a seizure in the clinic.

He also gave me a prescription for diastat in case we have a seizure longer than 5 minutes. I forgot to ask for a better sleeping med, so I emailed him today. I'm not too worried about a med that is a respiratory depressant, because he is on life support when he sleeps anyway!

We spent another 2 hours in the lab. They needed gallons of blood! We had orders for GI labs as well, that we were holding onto so we didn't have to poke twice. Well they poked 3 times, and still didn't get every tube filled.

When they finally managed to get a tiny vein, it took a lot of milking to get all the blood they needed. His arm was so purple it was almost black. I was really concerned that they were going to do permanent damage to his arm!

Look at the aftermath!


I documented this because I'm taking it back to our ped and demanding a port. This is ridiculous!

Mondo is super sick, on day 4 of fevers and a nasty cough. I'm really just praying somehow Jax doesn't get it.

Also daddy and my other two babies come home tomorrow. I miss my princess so bad! She's never been away from me before!! Tomorrow can't come fast enough!