Just a little recap if you haven’t seen the fundraiser page (paraphrased): Bella got discharged today. With Medicaid you pretty much have 3 days max to be admitted, and without a diagnosis we had no way to appeal. They tried to set up a medical transport to get Bella to Stanford to see a specialized doctor that may be able to help, but it was a super long shot, and her insurance doesn’t work for out there so that didn’t help too much either. So we’ll have to purchase her own plan for while we’re out there being evaluated and hopefully treated.
(For those of you who don’t wanna re-read what I’ve already let you know, you can skip down 4 paragraphs or re-read my paraphrased series of events. either way up to you.)
The doctor we had even offered to have transport take her back over to the ER to be re-admitted, but with how much stress and strain it would have on Bella we decided home would be a better option for now, rather than being worn down and going straight back to start with misunderstandings and no way of knowing who would pick up her case next. So the doctors who saw Bella while she was admitted wrote a few referrals to specialists out of state and to the headache clinic, wrote up a prescription for a bunch of steroids as both a preventative and an emergency med so when combined with the at home fluids and IV antibiotics it will hopefully help take the edge off the firestorm headaches, and pretty much just try to have her rest and take meds long enough to get to the other places to hopefully find a treatment or anything that will work.
On top of that they wrote very comprehensive notes in the discharge paperwork/summary. Stating that they’re not sure why it helps, but this is what we’ve found to not keep Bella from going catatonic. Everything we discussed, and notes from the consulting infectious disease doctor who went over her file for hours and seemed really interested in her case. Unfortunately everything that’s going on has been way out of their realms of expertise, but they’re hoping the doctor at Stanford, who’s at the forefront of research and treatment for cases like Bella, can do more for her than they could. Overall, other than the excruciating pain and rollercoaster of emotion and trying to get new doctors to understand anything about the case, it was one of the best experiences we’ve had while she was admitted.
On the way home, we stopped by CVS to fill Bella’s medications and we were informed that no CVS in the county had as many that were prescribed and they could only partially fill, and the rest would come in next week. Luckily they had enough for the next few days at least, or else it would be an inevitable trip back to the ER soon.
So while driving home and to the pharmacy, we didn’t stop trying to move forward. So we call to make an out-patient appointment with the infectious disease doctor who spent over 7 hours pouring through Bella’s charts, then came in and gathered all of her doctor letters, the NIH recommendation letter, and even the myalgic encephalomyelitis practioners guide, and read it all. He knows her case. Even sat with us to talk a long while to “see it in person, the charts are only in 1D” So I called on the drive home to make an appointment. No one answered for over 30 minutes, and when they did they told us they can’t schedule because she has NEVER seen an infectious diseases doctor before. Which we have many times. (We even still message the head doctor in the infectious diseases department, who has signed off on her case to the NIH.) So they try to transfer me to the front desk so they might be able to see her appointment history and can make the appointment. Darn our luck, It’s now 5:01p and no one is there to answer the call to make the appointment.
Also we found that someone, not sure who, had “cleaned up” Bella’s medicine list and took out vital medications that took us forever to get approved such as IVIG, which we were waiting to start only because her doctors wanted to find the safest way possible for her to start them, since she’s allergic to the pre and post medicines. We even talked to the doctors about starting it when she gets back from Stanford, but now we have to try to start the process over again. Which it’s a possibility that the doctor in Stanford may recommend IVIG and it was a battle to get the treatment approved the first time, I only hope it’s easier the next time.
Bella is not ok right now. Her vitals are still shot, her head still scary bad, and I’m hoping the meds work out enough to get us by to the next destination. We don’t know how the night is going to go, let alone the next 30minutes. We’re in the middle of the 3 meds as I write this, hoping Savayah goes to sleep and I’ll be able to run out real quick to pick up milk and POM. That girl does not want to sleep tonight, so that’s fun and I’ll hope she might sleep in a little so I can rest eventually too.
Let alone the very real fact that I might have to call 911 if the meds stop taking the edge off enough to keep Bella home. The fact I could lose her again to the next time it becomes uncontrollable and she’s being taken out on a stretcher and start the process all over again. There’s so much uncertainty, and it’s scary because even the unorthodox way we found to help the headache doesn’t take it away completely. At most it makes it more bearable for her, and the only real relief she gets is sleep. We hope it comes soon.
Not to even mention the normal every day stressors like food, water, bills and so on. It’s a struggle, and I’m doing my best to keep our heads above water, but this is all too much for anyone. I thank you all so much for the help and support we’ve gotten over the last couple of days, and I can’t express how much I appreciate it. You’re all amazing, and I promise we’re doing everything we can, constantly researching and doing our best to find ways to get everything we need to get done, done. Our next best bet is at Stanford University, and it’s going to be a rough journey there with our little family, but I’d move mountains for them.
Anyways before I fall asleep while typing, and losing my train of thought too many more times, I’ll end it here for the night. I’ll update as new things come up, but for the weekend I’m going to be doing my best to keep it relaxed and stress free as possible. Hopefully we are able to be home, the meds will work enough and next week we can start again on the grind with appointments and so on to keep moving to our goal of getting Bella back into life and being the amazing mom she wants to be 100% of the time.
Thanks for reading, sorry I’m not better at writing. Please share far and wide, and if you’re able to donate to our Stanford travel fund, please do. You can follow #helpthehero on Facebook and Instagram if you feel up to it, and as always you’ll forever have my love.
Sweet dreams everyone,