Well Levi strikes again…

Levi had a debilitating headache that started last night that lasted all through the night, despite having Tylenol, which is totally not Levi so we took him to Luries emergency room again early this morning. He only gets headaches if he has a fever or when he developed PRES like last November. He was exibiting all PRES signs except the seizures symptoms, thankfully he is still on seizure medication.
When we got here this morning, he had dangerously high blood pressure and a splitting headache. Neuro sent him for an MRI which turned out to be clear and ruled out PRES. ???? We were finally able to get him comfortable this afternoon with alot of strong meds and some iv blood pressure medications. Now the struggle will be what is causing it…. Is his blood pressure high first which causes the headache or is a headache causing the high blood pressure?
Zach and I think the high BP is causing the headache but the team isn’t totally convinced. We are admitted for the time being and hopefully we can get to the bottom of what’s causing it and how can we manage it.  

October 25-

It’s been a BUSY day here today! Overall Levi has been feeling much better today. He did homework, played with his toys, played some games- normal Levi things.

I think he has had every thing checked in his body today besides his lungs. The team decided that his high blood pressure(hypertension) is causing his headaches based on some trial and error last night but we still didn’t know what caused the hypertension. The team wanted to rule out everything so Levi had a kidney ultrasound, echo, ekg, and a nasal scope to check his sinuses. His mri showed some swelling of his sinuses thus the nasal scope. They are going to treat him for a sinus infection given his immosuppression and low white blood count with an antibiotic and some nasal sprays.
It seems like whenever he is getting high blood pressure, which causes the headache, is in the late afternoon/evening hours. So they are going to start him on another blood pressure med that he will take in the morning and at night. It takes a few doses to start working so he will get his first dose tonight. Hopefully between the two BP meds that will be enough for him to stay in range. There isn’t much more testing to be done so I’m hoping tomorrow is a more low key day. I’m not sure when we will be able to get evicted from here, it all depends on how fast these meds work and how he responds to it.

Thank you for all your thoughts and prayers. I’m happy today was a way better day than yesterday and he seems to be back to feeling like himself.