When it rains, it pours. My last post was mostly about Bella’s new PICC line as we let her port heal a bit, so it doesn’t break through her skin. We must have forgotten how much harder caring for the PICC is, but it’s not fun. With the port, at least the needle comes out every week, but with the PICC we have to just clean around it and try to not move it even a little. It’s a bit scarier and I don’t know how we did it so long before.
On top of everything else, we’ve had Savayah home all week with a bad ear infection. She screams in pain and hates taking her antibiotic, but we’re working on it. I don’t think her treatment was strong enough, and it’s the same ear infection as last month, but now she’s on a stronger antibiotic. She also brought home a nice little viral infection from daycare we’re fighting too. Let’s just say it’s been a fun week for the sake of our sanity.
Bella has been sick since the port went in, possibly before. Her headaches are severe and not letting up. Her body aches and hurts just about everywhere. Her chest pain is sharp and often. She’s had more ovarian cysts bursting over and over again.. shearing pain.. She screams in pain, when it bursts. worse than natural child birth.. it swells and is painful.. the actual burst is pain off the charts.. she can’t even stand a car ride, there has to be no movement.. then the fluids leak into her abdominal cavity it shows in all the ultrasounds and CTs.. PCOS is deep in her chart but no one is looking at it.. its not in her diagnosis, no doctors are listening and it runs in her family.. each cyst so bad she cant eat or drink.. she cant tel if she has to pee or poop because the pain over shadows all the human urges.. she gets so sick from not pooping for weeks.. not eating correctly.. each burst lasts a month of terror.. we are now hitting 2-3 bursts a month.
Staph infection resistant to so many abx… then CT of it in her sinus gland above her eye where it should never be.. it leads to the brain. These have both shown up for over a year. The headaches are so debilitating she cant move or even open her eyes.. nothing is helping it.
Ever since the PICC line was inserted she’s been throwing PVCs on her heart monitor. When she was in the ER alone there were 19 recorded alone. We also found out that there were 2 separate blood clots in her arm, around the PICC line, that we now have to watch out for, and I have to give her a blood thinner shot 2x a day til when the PICC comes out.. Not fun giving your sick wife shots in the stomach.. We even had to drive to CVS at 1am to get the pharmacist to help teach us. Every time it gets injected it burns in her abdomen for a while. So it’s been a fun nerve racking time. Even more so her headache has been constant and out of control for over a week now.
The clots were found almost by mistake. There are 2-3 the ER called vascular to consult before she left the ER, these clots are in areas that can travel to her heart and lungs any second. They also hurt her anytime she moves wrong, or puts any weight on it accidentally. Like black out levels of pain. We waited 6 hours.. so they told us to just go.. they guessed shed be okay and gave us the blood thinners.. However, they did not get the correct consults.. no one that truly could tell us.. so we were told to make an appointment with a doctor IMMEDIATELY ON MONDAY.. I called.. he doesn’t even work Mondays at all and her normal vascular Dr is out on vacation.. So we go see someone new on Monday, and hopefully they don’t make things worse or call EMS if her vitals are off when she arrives.
Her heart rate is out of the world.. she us withering in pain.. we reached out to every one of her doctors even old ones who gave up.. but here we sit.. hoping she keeps breathing.. No one is even mentioning the staph infection resistant to 6 different abx… the CT of it in her sinuses show the mass above her eye where it should never be.. it leads to the brain. These have both shown up for over a year. The headaches are so debilitating she cant move or even open her eyes.. nothing is helping it. There have been many times where all she can do is sit still and tell me it hurts.. It’s heartbreaking.
ER every other day where they discover more and more and more but still no help.. Still ignoring most of everything, even with positive test results, even with it all proven and diagnosed…
We even went to see Dr. Grubb on Wednesday, and he said, wrote and was recorded saying we need to treat the Lyme, Babesia, and staph to fix her heart. It was a 2 hour drive there, with a 4 hour wait as he was that far behind schedule, and 2 hours back home to hear he can’t help until the rest is taken care of… While we love and appreciate him, we’ve been saying the same thing for years, and have been nothing but ignored… Savayah and I both need testing as well. Dr. Grubb sent out a referral during the appointment to have us see Dr. Horowitz in New York. Bet your ass it’s all out of pocket: The travel costs, testing, meds… We just need one doctor to treat her, and we know Dr. Horowitz it the best, and has saved countless lives of people just like Bella, but even with the referral, we can’t afford it, as much as we need it.
I hate the health care system. My next blog will probably be a mini, but I’ll backtrack a bit to when she was last admitted (getting her PICC) and the horrors of that stay. Ombudsman and Administration was called about it all, but nothing has come of anything as of yet… On top of it all I haven’t really slept in 2 weeks. Between Bella and Savayah being sick, new meds and every day life for us, there just isn’t enough time to sleep. I barely carved out time to write this, but it’s been too long, and I needed to let everyone know what’s been going on.
So please donate if you’re able, we have more to do, more doctors to see, more testing to get done, and who knows what else as we’re already struggling to even survive the day’s up to the 1st when I get a little money to keep the lights on and feed us… Please share, it doesn’t cost anything but a few seconds of your time, and hopefully someone else can help out there, or who might have a lead or advice. Thank you for reading, I’ll upload more soon, finally figured a way to do the audio, just need to make time to sit and have it all uploaded. Some of this stuff is crazy to hear, but trust us we’ve lived it all and it’s not only crazy, but also frustrating and heartbreaking.
Again thank you for reading and bearing with me, hopefully it all makes sense, I know I’m running on fumes so to speak as is, but I tried my best to be coherent. Please share and donate. I’ll love you forever.