We've Moved the Blog!

We've moved Solstice's blog to GetWellSolstice@blogspot.com!

This blog solsticehae@blogspot.com tells a story of our misdiagnosis of Hereditary Angioedema and the trip we took to get to where we are today.

Now we are on a new journey.  The goal has not changed, it's still to find a way for Solstice to live a somewhat normal life, instead of the one filled with constant pain and frustration. We are so thankful for your continued support.

Please bookmark our new Blog!
getwellsolstice@blogspot.com
Check Solstice out on these other sites:
facebook.com/getwellsolstice for updates between blog posts
getwellsolstice.bandcamp.com to download her music
Email Solstice  to connect

Please read and share our story.  Help Solstice get well.  

The Holiday

Merry Christmas, Happy Holidays, Channakuh, and the like.

Overall, we had a great day, Solstice though in a lot of pain, worked hard to have fun, laugh, and be in the spirit.  There were quite a few moments however when she was just laying down in pain, and it hurts me horribly, even more so on a holiday. Leaving her tonight was the worst, but since I have a serious cold on top of a sinus infection, I had to spend the entire day not touching her, breathing deeply into my mask, attempting to convince myself that I could breathe my own hot air and be okay.

I eventually got used to it, and didn't  notice it as much any more, such is life.  It's interesting what you can get used to.

Life changes when you're child is sick.  Seeing young families walking down the street makes you feel as though you are on the outside looking in.  It separates you from your family, your friends, and makes you realize what is really important.

Solstice didn't recieve many gifts.  Since she is feeling better, we've been giving her a lot of books and activities the weeks prior to Christmas.  Luckily, she understands that, understands what financial stress we are under, and is thankful for the time with her family.  This is what I pulled off her facebook page: My family is giving up their home Christmas to spend it in a hospital with me. ♡ the holidays are not about where you are at or what you receive, its about the people you choose to spend it with. And I have some pretty great people. — with Olivia Norton and 2 others.

Today I am thankful that we have such an amazing Doctor, one who is willing to spend time, thought and energy on my little girl.  We've never had such a thing, and I am absolutely in love with Denver Health and the treatment in the ICU wing.

We don't expect Solstice to be released anytime soon, however she is now eating chicken, rice, carrots, grapes, apples, cantaloupe, coconut, and drinking rice milk.  With only two days until her 15th birthday we are trying to figure out a way to put all of these things together, maybe even whip up some vanilla pediasure in some sort of birthday like mound.

She is having a party in "the zone", an area donated by Garth Brooks on Friday.  Though she cannot have many guests, she invited the children from ICU, and although she cannot eat it, she asked us to supply a cake for the children who could.  "Bring Chocolate, I don't like chocolate cake, It won't hurt as much."

Acceptance is half the battle, fighting hard is the other part.  Luckily this little girl has it all.

I hope this day finds you and your family well, and thank you to everyone who has donated and helped us on this seemingly never-ending journey.  Without you, Mama would be in the sanitarium, of this I am certain.

Love and well wishes to you all,
Amanda

Losing It...

Solstice has been in ICU at Denver Health for 4 days.  She is now on a pick line and receiving her food intravenously, as of now, they don't know if she will ever eat again.

I have people from all over the world contacting me saying their children have the same reactions, the same situations.  All of them have been diagnosed with different diseases, and I am at my whit's end.

You know I worked for +La Tour Restaurant for over 10 years and when I asked them to put her blog up on their facebook page, hoping all those people that I served via the office and reservation for so long, one of them might have an answer, they said it wasn't business related and told me they wouldn't help.

On Thursday +Rocky Mountain Hospital for Children a new doctor walked in, pulled the oxygen from my child's face and screamed that she needed a psychiatrist, they released us as medically okay, even though she was having up to 7 attacks a day and couldn't eat anything without her throat swelling, at one point they even refused to treat her throat swell with benedryl.  Within' 3 hours she was in ICU. Why?  Why us?  Why is no one helping us?  She can't live like this, even her good days are worse than anything I've ever seen. The doctors at Denver Health asked why in the world Rocky Mountain didn't add a pick line, they can't even find a vein for an IV anymore.

I lost it at the hospital, with that doctor, and Greg has been trying to keep me away, with just a three hour visit each day, as I have been with her every night since this nightmare began.  I'm not very good in the hospital.  If you know me, you know that unless I'm doing computer work, I don't often sit down. The hospital drives me insane, but so does not being with my child when she is in pain.  I cry more out of the hospital.  Things are getting more serious every day, and I don't know what to do to save my child.

From Solstice feeling anxious
"Im literally allergic to life. Im allergic to the hormones my body makes, I cant eat or drink without attacking, they cant put a feeding tube in because they need that space for intubation (breathing tube) so, I get to get nutrition through my iv and pick lines. Maybe for a couple days, maybe forever. Could you imagine never eating again? Its honestly come to either that, or death. 2 days ago a different hospital overdosed me with epinephrine. It was the most painful thing I have ever experienced and it made the breathing situation worse. The people at Denver Health are incredible. Finally trying to help and trying new things. Now if youll excuse me, need to go get poked and prodded by a bunch of scary nurses and doctors."


I don't know what to do anymore, I can't imagine living without my child, and I can barely remember the child that sang from the moment she woke up until the moment she went to sleep.  The child that flew down ski mountains, and laughed as loud as she screamed.  She is mentally, physically, and emotionally wrought, we all are.   Now she can barley walk, and never sings.

I am getting angry, very very angry.  At people I believed to be my friends that never call, at the Ferzacca's for refusing to help, at the doctors, who when unable to explain the illness claim it's in her head.  I need to punch something, yet I know that won't help.  It seems as though nothing will. So, here I sit, crying, hoping that someone will figure it out.

Amanda

 

Another Never Ending Attack

It's been a while since I wrote, so many thing on my plate, it's hard to find time to jot down my throughts, though all the new research, new meds, new doctor visits we have.  I'm sorry I haven't stayed up to date with you.  We had a magical 5 days that Solstice had only mild attacks and we were not in the hospital.  We went to celebrate Olivia's birthday at Wine and Painting class, and redid Solstice's bedroom.  She had a couple of sleepovers, as friend time is so rare, and then we attempted a party on Sunday night that landed us in the Vail Valley Medical Center.

Solstice wrote a song to sing on Ellis birthday, as she is the person who did the fundraiser for Solstice while we were in Cincinnati, one of the only reasons we were able to pay rent and continue caring for Solstice this last month.  It was an adorable song, about saving her life and thanking her for caring.  Shortly after, Solstice started to feel sick and before we could get out the door she had a throat attack.  We hit her with an Epi pen and then Benedryl and called an ambulance.  The gut buster of the evening is since Solstice was in an unused dining room of Blue Plate, many party goers did not realize what was happening.  As the Vail Firefighters (known for their hotness, and no Ryan didn't show up) were dispatched into the restaurant, the girls started screaming... YES WE HAVE STRIPPERS!  WHOO HOO!  The sadness on their face when they realized it was Solstice and not strippers, was something I'll never forget.

Vail kept her for a day, as I was hoping the attacks would end, but they didn't and we had to be brought down by flight for life via ground crew to Rocky Mountain Children's.  She has been having nonstop attacks, up to six a day for days now, and she is starting to get really down.

You see, she has a cyst on her only remaining ovary (she had the other removed for a dermoid cyst a year ago) and it's causing immense pain every time her tummy swells, which causes more pain, thus more reaction.  This disease has no real triggers, no real way to control, and it never ends.  She has said many times today that she would prefer to die than to live this way, and it is the most heartbreaking thing I have ever heard.

I am meeting with the OBGYN today to see if we can remove it, and I am hopeful she will understand how important it is that she gets this thing out.  It's grown from 5 mm to 2 centimeters in three weeks.  If it busts open, her body will not be able to handle the toxins and she could be hospitalized for months, or as always, what could happen everyday, she could die.  It's also causing major pain, which increases her stress, which causes her to re attack.  It's a fine line every single day.

I feel so out of control.  I have people say a lot of strange things to me, and I know that all of them mean well, but the one that is most used is.. "Well at least it's not cancer."  The reality is, we would choose Cancer over this condition any day.  Cancer has research behind it, Cancer has good survival rates, Cancer has an ending, either you get cured or you die. And if you do die, you at least have some warning, to come to peace with it.  We, on the other hand are faced with the reality that we have no idea what could set her off, which of her throat swells could be life threatening, and anyone of us, the hospital, Greg, Me, Olivia, could make a mistake and misjudge the difference between a slight throat swell, vs an anaphyalixis episode and she could die anytime, any moment.

I know that I could forgive my husband or my best friend, but I know I could never ever forgive myself.

You see the National Organization says that at the site of throat swelling you must EPI pen and go to the hospital immediately.  But Solstice has a lot of throat swells that give the sensation of not being able to breathe, as her throat swells slightly, but  not completely.  We are able to control it with Benedryl and resemic epi (anti-inflammatory that is similar to a nebulizer treatment.)    We can't give the kid Epi's six times a day, and we can't spend the rest of our lives in the hospital.  We have to find a way to judge the difference, and all the research tells me there is no way.  She can go from fine to dead in minutes.

I don't know what is right, what is wrong, what I can do to save her, how I can help her... except to be the best advocate I can, and hold her hand through the pain episodes.

Please be thankful today for your healthy children, and feel free to donate if you have a few extra dollars.  I am unable to work, and right before Solstice got sick, Greg quit his corporate job to start our new company, green monkey.  Life is throwing us curve ball after curve ball, and one of these time we are going to forget to duck.

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New Diagnosis?

I've hesitated to update you all up on what is happening here in Cincinnati, as we have had a possible different diagnosis, but were stuck in limbo waiting for test results, and then a trial on new medication, to assure they were correct.

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.

That is the reason she was at death's door when we arrived here. The medications to treat HAE are far different than the ones to treat her new diagnosis. Chronic Idiopathic Angioedema. Idiopathic means essentially that they do not know where it comes from, and chronic of course means often and forever.  This disease is in the same group as HAE, it has almost identical symptoms, identical pain, identical triggers, EXCEPT IA (idiopathic angioedema) patients have a specific trigger to blood products.

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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Please Visit Blue Plate Today for lunch and Support Solstice

Thank you to everyone who has donated money, the Vail Daily and Randy Wyrick for the fabulous story, KYZR for radio spots, Copy Copy for printed materials, and most of all Chef Adam & Elli Roustom for donating their restaurant, their time, the food, and most of all for being true friends.

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Cincinnati Children's Hospital

We made it to Cincinnati, at 4 am. The flight was delayed due to issues with the plane. We were all loaded on 50 minutes late, then unloaded to wait for another plane. This was after being stopped at security for the 50,000 dollars worth of drugs that were in our bag as carry on along with needles and such. That wasn't as big of an issue as the fact that my laptop tested positive for bomb materials. I know I'm explosive, but come on...

So, though the first part of the late plane was a blessing, it stressed Solstice out, and she had to self infuse in the middle of the airport. We had been preparing her for this flight for days by pumping her full of drugs it worked! This video makes me smile.     By the time we boarded the flight I had been awake for nearly 48 hours. I ordered a wine, took a drink and passed out instantly. Our friends from Leadville Jessie and Brett live just 2 hours away in Northern Kentucky, and Jessie drove up and took us to the hotel. Thank goodness she's a patient person, as she waited over three hours at the terminal. Friday, Brett drove up and picked her up, and they loaned us one of their cars until the 23rd. Such wonderful people to go out of their way.

We made it to Dr. Jonathan Bernstein at noon later that day and within a few minutes were told that Solstice's symptoms did not line up completely with HAE. He stated that either she has HAE, and something else additional that is creating non-stop attacks, or she has been misdiagnosed. He immediately placed us in Children's hospital.

I feared flying because I know for certain in my heart there is something going on in her brain. She loses her vision, and she has these seizure like things during an attack. They are getting worse everyday, and her attacks are coming on faster and faster. I seriously believe we got here just in time. Mama instincts are powerful things.

This is the hospital where HAE was discovered as a disease. They are testing her for another form of Angioedema called Idiopathic, and our genetic mapping test results should be in by the 20th.

Cincinnati Children's Hospital is a totally different place than most hospitals. This morning Ryan Seacrest was in the Lobby as he just opened a studio for kids to record down there. Daily a massage therapist is sent in to Solstice to help her relax, and parents are also allowed to be massaged. I just finished receiving one.. not a bad perk. They take care of parents as well as children here, and that is a far cry from what we experienced in Denver.

 My team of doctors are focused and caring, and they run in two week intervals, so you don't end up with a different doctor every day. I can see why they are rated so highly, even with just being here a few days.

They treat the mind, body, and spirit here and want to begin working on getting Solstice back to enjoying life. They stated that it's very possible that we could be here for months, depending on what happens. I've been living in the hospital for close to three months already, so I'm getting very used to the concept. It's amazing to finally feel like we are getting somewhere, that these people are actually going to help us. They have the knowledge to do so, and appear to really care, it's like a nice deep breath of clean mountain air after being suffocated with bullshit for so long.

Thank you to everyone who has helped so far, we still have a long way to go, but with your love and prayers, I think we are going to come out on the other side....

Special Thanks to Elli Roustom and Chef Adam for putting together the pulled pork fundraiser. Vail Valley friends, please attend!

or if you can't attend, you may donate online by clicking the link below: https://www.giveforward.com/fundraiser/03g3/help-solstice-get-to-cincinnati