Hi There!
I am sorry for leaving y'all without any updates. SO much has happened since I last posted. I was released from the hospital on IV antibiotics a couple days after getting the hickman placed. Soon after getting home, I began declining again. J tube pain, redness, overall not feeling so great, etc so I went to the infectious disease doctor who put me on an additional IV antibiotic that turned things for the better again. My J tube began hurting severely yet again, but it was determined it wasn't that the infection had returned so the next thing was to see if it was possibly the position of the tube. With the PEG style J tube it comes straight out and my waistband would cause it to get cocked in an odd position which, in turn, made it very painful. They changed the tube to a Mic Key Button tube that is flat against the skin and, when accessed, comes out to the side instead of sticking straight out and catching on my clothes. That took care of the problem, thankfully!
I've been having issues with my teeth hurting and just crumbling off. I went to the dentist and found out the reason behind it is that I have lost the enamel off of the majority of my teeth, making them brittle and of course stripping the outer layer off your teeth makes them extremely sensitive. Not being able to do fluoride makes it quite difficult. I've been doing the coconut oil swish technique, but the pain is just worsening and getting about unbearable. My sister has contacted UNC Chapel Hill (where I've had my extensive dental work done in the past) to see if they can do this special laser treatment that is supposed to help rebuild the enamel. I'm still waiting on a response from them. Its so painful right now that I'm ready just to get rid of my teeth and get dentures. I know thats a radical decision, but I'm in so much pain with it right now that I just don't care.
Lord willing, Monday my mom, sister, and I will be headed out to Duke. We will be staying in a hotel Monday night because I have a tilt table test on Tuesday. I had one several years ago, but was only diagnosed with IST (inappropriate sinus tachycardia) because I wasn't in a flare so the test didn't show everything that happens. We have waited upwards of a year and a half for this day to get here. I was actually in a bad flare when we called to ask for a STAT (layman's terms: ASAP) tilt test because of the flare, but the soonest they had was this Tuesday. I've been in a flare which is actually a good thing. No, it is NOT fun to be miserable, but I really need you to pray that I will have a terrible morning on Tuesday so they can see my blood pressure drops and heart rate issues amongst other symptoms. I started having pretty big issues about a week and a half ago which included my glucose dropping rapidly. At one point, I was in bed just about asleep when I started feeling terrible...I knew those symptoms and took my sugar to find it was 49. I've been having to keep a close eye on symptoms to be careful I don't let it drop too far. I've spent most of my day on the couch today. Let's just hope this flare magnifies on Tuesday morning! They don't want me to have any feeds or meds after midnight on Monday. I'm considering stopping my IV benadryl pump as well which would be dangerous, yes, but it would ensure they see symptoms... the ones at Duke asked me to if I can but it's not definite. It is being considered, and they do have every resource to care for me in an emergency. Before the test, they hook you up to a blood pressure cuff on your arm and finger, oxygen monitor, heart monitor, and shock pads (in case you go into a dangerous heart rhythm) and I feel safe that they would do my emergency protocol for any dangerous situation that would arise. But I'm still a bit nervous about taking that drastic step.
Thank you for hanging in there with me even when I'm super slow at updating! I would appreciate your prayers especially about Tuesday morning.
Taking Life One Flare at a Time...
Allison
