hey hey! wanted to update on what's happened since october!
so i saw my orthopedic surgeon on november 3rd and he had no idea any of this was still going on and has never seen this, but my hardware looks good! he was so disappointed that my fusion caused all of this but didn't have any ideas. we finished up clinic with a few tests for the research studies I'm in.
mid november, i was admitted to the hospital all of my drs are through but was discharged with no relief. while i was there we found a good anticonvulsant that works for me but the oral version unfortunately wasn't doing anything, despite a therapeutic dose. the next weekend i was admitted back to the children's hospital and gosh that was quite the admission. i went in after 3 weeks of not being able to swallow anything and felt awful. we were taken back immediately, they called my dr, and i was admitted upstairs in under an hour. they only gave me iv fluids while in the er since the plan was to start DHE when i got upstairs.
the first 4 days are a complete blur as i was doing DHE, super sick, and malnourished. i partly remember being super sedated and loopy on a seizure drug^^ they gave me a bolus of and Mattie visiting haha. i also remember making a trip down to the atrium to watch the christmas tree lighting outside, that night, then completely crashing when i got back to my room. earlier that day, we had made the decision to place an NG feeding tube the next morning. the speech language pathologist and physical therapist came in for a while and were convincing me to agree to the tube. i really really didn't want one but was so weak that i couldn't walk more than a few steps. i remember the physical therapist watching me walk and said "this is definitely a nutrition issue not a pt issue". that's when i realized how bad it was and i agreed to the tube.
one of my sweet friends, Arina, happened to walk in right before the nurses came in to place my tube. placement wasn't great but was over pretty quickly. we started feeds very slowly, a few hours later, but the formula (Kate farms) was making me incredibly sick so we switched the next day. that morning, the slp came in and said she was up at 2am thinking about something that could help me swallow and came up with the honey bear cup. you squeeze the bottle vs sucking the straw. it didn't make much of a difference since i was still having to swallow, but its the thought that counts. that weekend was jam packed with testing and procedures. on sunday, i had a pano down in the er then an oral nerve block later that day. that block was so so horrible and my parents weren't there, but my nurse stayed with me the whole time. the block worked for 5 hours and i was able to chew!! i wanted to be discharged so so bad but i wasn't stable enough to leave. thankfully my refeeding labs were stabilizing. two nights later, right at shift change, i was brought down for an urgent brain mri. it was the longest hour of my life and i was mildly freaking out because i was having so much trouble swallowing while laying flat. we got the results the next morning and it showed that i have two cysts in my brain right along the vagus and glossopharyngeal nerves. aka right where the issues originate. i was thankfully discharged the next evening after 2 weeks!
the next few weeks at home were pretty okay as we had family in town and it was christmas time! i thankfully switched dieticians and LOVE her! i've followed up with neuro, ENT, plastics, neurosurgery, and gi. we haven't made much progress on any kind of answer or solution, but will update on what we have found, when i'm ready. we did start LDN, a few months ago but no relief yet. on the other hand, when I met with GI, he immediately put in the order for a GJ tube (due to not tolerating feeds at all) and the g part was placed mid january. that hospital doesn't place the j portion for 5 weeks but thankfully i was able to switch to my primary IR team and got it switched after 3 weeks. then 2 weeks later I got the AMT button! its all healing really well and i'm finally getting adequate nutrition. i had my NG for only 6 weeks but we all agreed that since we still didn't know what the issue was, we were at least a few months away from pulling the tube. it was also irritating my face and throat immensely, adding to the pain.
after taking last semester off from school, I am taking my last prerequisite for nursing school this semester! its kicking my butt and insanely time consuming but its nice having another distraction. i'm trying really hard to get back into my old life but the pain and fatigue ramp up each time.
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