Her Journey, My Struggle

May 3

Another diagnosis...

The results came back from my EEG and confirmed that I'm epileptic and that the staring spells were absence seizures. I did not get a tonic-clonic seizure while on the EEG, so we are not sure what is happening in my brain during those. My neurologist does not want to do another EEG where they try to induce seizures while doing various things like flickering lights. She prescribed an anti- seizure medication that works for more than just absence seizures and hopes that the tonic- clonic ones will stop with the medication. I also can get this medication through an IV (in my case, my port)which comes in handy if I'm having any issues with my tube. For now though, I'm taking the liquid through my tube.

I also stopped the TPN! They still want to have my PICC placed just in case, but when I am discharged they will remove that on the day of my discharge! I also weigh 96.7 lbs as of this morning. They want to aim for 110  (if I tolerate the new rate).

I'm back at my feed rate of 60 ml an hour every hour for 22 hours. The other two hours of the day are when I typically shower. Yet, they want to try to work up to 75 ml which would only be for 18 hours, so if I did go back to school in the fall (still up in the air after this crazy admission), I could have time where I wasn't hooked up to it, and I could be normal.

 This summer, my GI talked to my nutritionist and my parents and I about doing another gastric emptying scan to see if by any chance my stomach has improved and if I could end up tolerating even something by mouth. Depending on this, I would also change my feed rate again (if it goes well this time around) to where I would only have to be on it in the evening hours. He definitely wants to in the next coming months change my tube to something called a button (especially if my rate goes up). Right now I have a tube that constantly dangles from my stomach. With the button, I'd only have a tube connected to my stomach when I'm hooked up to the pump. Then, when I'm not, you won't be able to see it because it's just a small plastic circle on my stomach with some little access points on it. 

This admission would only be like no more than 2 weeks and it could really help my quality of life. I'd be less likely to also get it caught on something and have it pulled out.

I start physical therapy again Monday but I will probably be discharged in the next 2-3 weeks, everything permitting, so I'll probably go home fully wheelchair bound for the time being. I'll then do outpatient physical therapy along with my weekly wellness checks and infusions like done previous.

I'm hopeful that things will turn out better. I really want and kinda need them to. I want to go back to public school and I want to do normal teenager things. I'm afraid my parents still want me to do online school, but all I really do now is go to the doctor (or be in the hospital) and do school work and I'm already almost done with my 10th grade classes. If I do classes at the school were my dad teaches, I would be able to take my time if anything happened and still graduate on time if not early. 

I just want to be normal.