Sorry about the long wait between posts, a lot has happened. I’ve simply been too exhausted to sit down and write at the end of the day. For the past few weeks we’ve been in overdrive.
Let’s start with what’s happened recently. Bella lost her aide abruptly when she quit due to family emergency. Which is fine, however that meant no more help and I had to pick up the slack. I missed my classes which I need to pass in order to keep using my GI Bill to get some sort of income, and now I’m worried for next semester if I can keep it going. Sucks mostly for my GPA, but it happens sadly. At the same time, Savayah’s daycare lady had to go to Puerto Rico for a funeral, so double whammy. It pretty much tripled my home workload over night, and without help it was tiring to say the least.
Bella has also been doing pretty rough lately. We’ve been in the ER at least every other day with her vitals being so critical, not to mention the doctors visits. We even finally had the Doctor in Toledo appointment we’ve been waiting over 2 years for, that didn’t quite pan out in the least. He’s the guy a lot of people see and get help, when they’re similar cases to Bella, however looking over the testing she’s had, and everything we’ve tried and ruled out, he didn’t have any real ideas to move forward. He said “You’re condition is at the edge of human knowledge, and in order to get past your constellation of issues we need to expand that knowledge by researching and trials.” Unfortunately for us that just means unless we make a breakthrough, it’s more or less a waiting game for science to catch up.
Having Savayah with us made it a bit harder since she would not sit still. New places she wants too get into everything and I felt bad she was running around the exam room while we were talking to the doctor. Less bad when he couldn’t really offer any help. But I was able to set up a bed in the back of the car so Bella could lay and nap on the way home.
We’ve been in and out of the ER almost constantly since last I wrote. We tried our best to stay out if at all possible, especially with Savayah. I wish I was awake enough to describe it like it was. So many times we go in with Bella high HR, Chest pain, Leg pain, Severe Migraines, ect. Every time they can’t figure out anything, and the last two trips they even missed a Sinus infection that’s grown quite a bit. We even had to interview people for a new aide while in the ER between testing.
We finally picked someone who seemed like they would be a good fit, and that was a disaster. She called off immediately on the day I was supposed to be able to go back to my class, she called off the next Tuesday which I was supposed to have class again. She didn’t listen to what we showed her, and walked away as bella was trying to show her how we do things. When we changed the bed sheets, she wasn’t paying attention to what we said, grabbed a blanket that was full of dog hair and tried to put in on the clean bed. When we tried correcting her, she called Bella a bitch under her breath, and needless to say she was just an all around terrible person. Lied to our faces to go home early. We fired her even if it meant not having an aide because it was like doing double the work, and being disrespected was worse than me missing my classes. We ended up rehiring the aide that quit on us because at least we don’t have to re train her, and we know what to expect. Still not a great option, but better than nothing and I was able to go back to classes this week.
The at home pharmacy has also been messing up her medication orders. Sending the wrong meds, missing supplies, making it near impossible to get her treated correctly for what we can treat for. Tonight alone, we spent over 2 hours on the phone to try and get her correct medicine. Their answering service has been impossible to get a hold of, and even when we call the on call pharmacist directly, it just goes to voicemail. We even had her doctors office try to call 4 times without anything resolved. She’s feeling horrible, and we’re hoping to stay out of the ER tonight, but she needs her meds and we can’t get them.
It’s almost tomorrow already, but I felt it was way too long since last I wrote, so I’ll try again tomorrow with better updates, because I feel like tonight I’m not in a writing mood if that makes sense. For tonight I’m going to try and comfort her, and make sure we make it through the night, and start the fight again tomorrow, where hopefully it being Sunday doesn’t make it harder.
Looks like our next trip is to Stanford University for a special doctor and some research. We’re doing our best to save and get her there, but with time’s as tight as they are it’s going to be tough. if possible please share our story far and wide and if anyone is able please donate to our cause. Bella is the most amazing person I know, and I’ll do anything to help her get better. Follow #helpthehero on Facebook if you’d like for some of Bella’s updates. Have a nice night/day, and I’ll have more for everyone tomorrow.