I think I'm finally comfortable in our new diagnosis. I am seeing Solstice improve daily, and although she will still swell for the rest of her life, have pain for the rest of her life, it seems that we spent our life savings on a wrong diagnosis. Borrowed money from friends to get by...let bills to to creditors...months of our time spent in hospitals. Now, it did eventually lead us to a correct one, but in the meantime, I stacked up huge hospital bills, and most what is most discouraging is that by treating the wrong disease we made her pain worse instead of better.
You know like the plasma based medicines that we were giving her. So, they would stop the attack in her throat, but never touched her tummy or knees, and as they worked their way though, they caused another attack, which caused us to give her more, which caused another attack.. you see where I'm going with this.
The entire time we were slowly killing her when we thought we were doing the only thing we could to save her life.This is so difficult for me to type, knowing that I did such harm to my child, all while trying to help.
What's funny is that Vanessa Williams was putting her into a documentary about Idiopathic Angioedema, when we believed her to have Hereditary because she couldn't find a kid willing to do it with IA. I should have picked up on that. My life has a tendency of pointing things out to me. It's another matter if I am paying attention or not.
Hindsight... I seriously could just kick myself..
So, here is the story. We arrived in Cincinnati to see Dr. Johnathan Bernstein Thursday night, our appointment was at noon Friday. Being a researcher and one of the top HAE doctors in the world, he wasn't much of a people person. I had been sending medical records for a month at this point, so he had almost everything. I brought in the most recent medical records, from the most recent hospital, and he accepted them and sat down at a desk that didn't face us.
He moved papers around, read a few things, and asked a couple of questions and then said "I don't think she has HAE." Now, to give you background when I was on the HAE facebook group several people warned me against seeing him, saying that they had seen him and he had told them the same thing, but other doctors had assured them he was wrong. So, though I knew him to be at the top of his game, I still had that other info rolling around with it. I mean you don't get to be on the National and International board of HAE if you're a dope. Besides, it seemed to me that during my interactions with him, he seemed to be a caring fellow. (I'd been in contact for at least a month prior.)
So I say, okay sir, you're the man, what do think she has. To which he replies, I have an idea, but I'm going to call my fellows over at Children's Cincinnati and get you inpatient at this facility. We went and grabbed some lunch across the street, came back and waited about fifteen minutes while he made the calls, and true to his world he got us right into a room. We went through admissions and then literally went directly into a room. This has never happened, we have waited up to 7 hours for a room before. Still with the drive, the admissions it was probably close to 6 pm by the time we actually settled in.
The first few days were the weekend, hospitals don't move very quickly, and all the fellows and residents are on, they continued to treat her attacks with the meds we brought with and then brought some in from other places because they are so expensive and hard to get. On Monday our real team assembled (we're the red team) and they spent a couple of days going mountains of records, on Thursday they came to me and said that the genetic test results had come in from National Jewish, and they were negative for HAE type 3. They suggested that they believed it to be IA. They started her on the new meds Friday, and now on Sunday already she is so much better, it's nearly a 180. She is still attacking daily, but only daily, and I hope that we find a med list that improves that even more. She is walking (still has balance issues) but she can walk for up to 8 or 10 minutes at a time now. We are still at the point of trying meds, to see what works and what doesn't. As many IA patients have a lot of sensitivities to drugs.
I was sure I was risking her life by bringing her here. I was so scared she would come off the plane with permanent brain damage, or paralysis. But I had no choice, and it turns out, it was the right choice. The medications to treat this disease don't cost a million dollars a year. They are made up of epi pens, steroids, and antihistamines, until they find another option.
I can't wait to call the insurance company and mention that the next time someone needs a medical transfer, they should give it. If I hadn't had you all, or for specific to this case, Scott Archeletta to pay for our plane tickets we could not have come. I have literally saved the insurance company millions of dollars, while saving my child's life.
This disease is also very rare, and the research on this one is even less than HAE. I'm having issues finding information, because its usually just a paragraph or two on certain articles about HAE. I asked my doctors for this, and they provided me with two articles that are exactly the same, 2 paragraphs of info that don't give much info.
Luckily we have Vanessa who is making the documentary Solstice and her music are set to star in #Lifewithoutafork and should be completed late in March. I am attempting to utilize her as my patient advocate, but so far the hospital hasn't been too on board with outside assistance. But as always I will continue to fight until my child gets the care and treatment she deserves. I'm asking them to give her higher doses of antihistamines for a week or so, so we can kind of "reset" her body, as it's been in a constant attack for nearly five months. One dose of one antihistamine is not working.
Their promise upon me coming here was that she would leave with her quality of life restored. If she is up all night in attacks, with massive pain... how will she ever attend school? Hold a job? Any of those things regular folk like and and I do? They are assembling a care conference tomorrow, with everyone involved in her care to find a better plan. I hope to be home for Thanksgiving, but for now everything is up in the air.
The hospital is amazing. Really amazing, but I also feel that they prefer to air on the side of caution and are not always as aggressive as they should be. After months in the hospital, I've learned how to mellow out, how to calm myself, and how to match their unwitting ability to talk in circles, and throw it back at them as they do me. Maybe I have a future in corporate America after all, smile.
But for now, Solstice is getting better, she is still in a lot of pain, but so much better. I am thankful for the hospital and the staff, and for the amazingly strong parents I have met here. I can't believe some of the stories I have heard, and how often an illness in your child doesn't ruin either their or the parents life, but in fact makes us stronger, better, improved somehow.
As you can only cry so long before you have to stand up and start putting one foot in front of the other, even if you don't know what direction to go.
Special thanks to my friends, Elli & Adam Roustom, their staff, and the entire Vail Valley for the pulled pork fundraiser last week at Blue Plate. Though we still have a long way to go before we can find our way back to where we were financially, you not only gave us some to start, you also rewired my heart, and reminded me that I am not alone in this fight. I don't have to put my head down and be her only voice. There are many people that are willing to help, and that is the best feeling one in my position can imagine.
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