The get away, police, and even social services

Gawd, I love that kid.  Solstice has been in Children's Hospital about a week.  She was flighted for life there Tuesday.  We recieved a much better doctor, Dr. K. Windmore, one that seemed to care at least.  She provided Solstice with the drugs required to get better.  She looks great right now, and though she is in a lot of pain, she's happy to be home.

Did we get released from hospital?  Nope I, and my partner in non-crime Greg, broke her out late last night. You see the hospital decided that instead of administering the drug at the beginning of an attack, they'd like to wait until it hits her airway. Since the magic medicine, otherwise known at Berinert, works best the faster it is administered, and takes a minimum of 30 minutes to work I felt very deeply they were risking my kiddos life.

On Thursday we tried a new drug called tramadol, probably around eight pm or so,  it's a non-narcotic pain killer.  As we were hoping to find a non-narcotic option to Solstice's constant pain.  This immediately started an attack.  She was given the magic medicine and and I was told we would re-evaluate at midnight to see if she needed another dose.  It's common to wait 2 hours to how effective the stuff is.

Solstice's blood, found on the counter of
ER  hours after it was taken for the second
time this week.  

At 10:30 pm it was obvious that Solstice needed an additional dose and I asked the nurses to contact the doctor.  They said they'd ask, like they do, masters of distraction.  Somewhere around 12:30 or 1 am the doctor called to tell me that they didn't have another dose, and a delivery would be present in the morning.  I being the mama bear I raised my voice to the doctor and explained that she needed to have a dose couried in immediatley or I would take Solstice to another hospital that had the magic medicine.  This later was reported that I threatened her in some way.  I assure you, I did not, and even Greg admits though I was bitchy, and even I admit I lost it,  I certainly didn't make any threats.

Meanwhile Solstice is screaming in pain, again, in the hospital where they are suppose to have the means to stop it.  She's pissed and screaming, and these two nurses are just awesome, helping her, making her feel better. There came a time where I just couldn't take it any longer and I cried in the hallway for about an hour while two security guards stood over me.  Admittedly, I couldn't help but stick my tounge out and blow rasberrries at them once or twice through my tears.

But only because I had been cornered in a bathroom in the admin wing for crying the day prior. I'm a cryer, it's the way I get all the icky energy out.  That time there were four or five surrounding the womens single bathroom.  I had to text Greg to come rescue me.  Seriously, this is a children's hospital.  I can't be the only crier in the place.  Can't they give us a nice place to fling our emotions out, so we don't show it to our kids?  They simply are not very family friendly there.  So, to entertain myself I threw out a couple of raspberries, I couldn't help myself.  It made me smile a little and I think they might have to.

At 2 am they started the process of getting her the drug, and by 3:30 am she was in the clear and falling asleep.  I awoke the next morning to a lecture about my behavior and I responded with a strong dislike that I was lied to, and that I was uncertain I could trust them with my child.  Solstice asked that Greg and I leave, that she needed space.  She's 14, and constantly stuck with her parents... I get it, but it still broke my heart.

It was a realization of sorts and decided that since I had spent nearly every hour of the last 3 months caring for my child, night and day, helping her to the bathroom, feeding her every meal, holding her hand through thousands of  pain episodes, I was close to the edge and needed to get away.  We just moved here, I know no one.  No one has offered to stay with Solstice for an evening or a day so we can have a minute away.  I know myself well enough to know that I needed this time, and with her stable in the hospital I actually could.
I drove 100 miles to my friend Elli in Avon, oh Elli how I love you, cried, drank some wine, and gave her some information to send to her sister in Austria.  I received a reply and emailed a German doctor that specializes in this disease this morning. I don't know where it will lead, but I've learned to ask, ask, and ask some more... and eventually if I ask enough, something comes back.

I came back from Vail and spent the first night out with  my husband in probably close to 7 months.  We bought some Ani Difranco tickets off the street (the show was sold out) and had a great evening.

The next morning Solstice was ready to see us.  I had several appointments, one of which to get some anti anxiety meds, because talking in circles with interns tends to make me itch my eyeball with my middle finger,a lot.  I have a really hard time being polite when my child is in pain and the doctors are pretending to "go get something" or "go talk to someone"  I believe in action, and before I could act, I needed to get my reactions under control.

We arrived at the hospital last night around 6:30 pm.  We had packed up to be there through Thursday.   I couldn't shake the feeling that something was really wrong, and neither could Greg.  Solstice looked great, sang songs and smiled.  It took me a while, I was trying to feel the energy, it was hard to ascertain what was bothing me.  As I stared out the window overlooking the lights of Denver I suddenly realized that we shouldn't be here.

Solstice's arms today after being in Children's hospital,
What in the world did they do to her?  The IV sites are infected. 

The weekend doctor had been in to see Solstice once, and told her that they were going to medically release her on Thursday, but that they may send her to a pych ward.  You see, a day prior she had told her nurse that she was having intrusive thoughts.  Not that she wanted to hurt herself, just that she was sad.  So, being the hospital they put a "babysitter in with her for the evening".  The text I received that morning said "Mommy, I need you.  They put a sitter in here because I was sad and I couldn't sleep because she was watching scary movies and talking all night and now I'm on 24 hour watch and I miss you and I need you to come and watch me so she leaves.  I'm scared and I can't deal with her.  She's mean, and she won't let me watch scooby doo, she's making me watch the news on MY tv."

Jason Zamkoff - Mr. threaten Pych ward

Nice, first the doctor tells her they are going to commit her, then they set her up with a woman who lacks empathy of any sort.  Seems perfectly legit for a child who has just been diagnosed with a painful and possibly terminal disease right?

Now that both of her parents were in the room, I asked that the babysitter be removed, that we could keep her safe, they refused.  Instead they placed her outside the door with the blinds open, and when she bathed, they made her keep the door open.  I watched all this, not understanding what was going on in the night doctors head.

So, I say I'd like very much to discharge Solstice tonight.  Taken aback, they question why and Greg asks that we move into another room to discuss, as not to upset Solstice.  I think there were five of them.  I took the comfty the seat and walked them through all the reasons I did not believe they were providing my child good care, mostly the bit about the decision to withold the magic medicine, unless there is throat swelling, even though the manufacturer and my own eyes have witnessed that the faster you give it, the better it works. The number of times they had not read the inactive ingredients on meds, and had caused attacks.  The fact that they wouldn't release the babysitter even though we were present.  Additionally, they put a fentenyl patch back on her, even though we have a suspicion that it had some inactive ingredients that were causing attacks.

It ended with us shaking hands and the head doctor asking we wait ten minutes for some silly reason.  My husband looks at me and says, somethings not right here, lets move.  We pack up quickly, we make to the front door, and the security gaurd says "You are okay to leave right?  Someone called down and said that someone was leaving against medical advice."  I say, oh no, that's us and hand her the paper I signed that says I am leaving against medical attention, and will not hold the hospital responsible for anything that happens.  I just happened to add "but will hold the hospital responsible for things that happened during our stay."  They love that by the way. I tell Greg and Solstice to head to the car, and as she is listening to the report of us I run up the stairs.  We pack up our vehicle and high tail it out of the parking garage, just as the security car is pulling up to block us in.

We make it home, watching the rear mirror the whole way, feeling all MacGyver like. Within 10 minutes of arriving home we have three police at our door.   We explain, Solstice comes out and says that she feels much safer at home than at the hospital.  They inform us we are within our rights, an shake our hands and leave.

I take Solstice to the doctor this morning, get pain medication and the progesterone they didn't return to me at the hospital a(which they did not give to her at exactly 8:30, and could be causing an attack right now actually) and shortly later a knock on the door brings Social Services.  We tell our story again, and she too seems to understand that we are just trying to protect our child.

We have a plan afterall.  The hospital was not going to give her another dose of berinert, our next dose is set at the allergist tomorrow, where they will teach us to self inject, so we don't have to depend on the hospitals.

I've contacted John Hopkins and the doctor in Germany attempting to find a specialist to treat my child.

I've secured pain medication for her, so she can at least feel a little better as the swelling slowly subsides in her tummy. As well as the medication we are hoping will allevate the number of attacks, the one I researched and discussed with my allergist.  Children's never once attempted to help me with this.

And, I've found four vials of the magic medicine at Boulder Community Hospital just in case she attacks today.

So, I know I've been asking a lot lately but .... if you wouldn't mind, if you know me well enough, could you please take a moment to write your thoughs about the kind of parent I am, so I can foward this to my social services case worker.  I can't believe I have a social services case worker.... though I actually liked her, she was professsional and I sensed that she understood how much we love that child.  Since Solstice was born I have done everything I know to do in order to be a good parent, and to raise a good child. Sigh.... good ole 'merica

Click here if you'd be kind enough to leave a note about our parenting skills, I'd just love to be able to email it to the case worker before the review next Tuesday.  Pretty Please?

Even though it's completely legal to remove your child from a facility you do not believe to be helping her, both the police and the social worker said so, those assholes sure know how to play a mean game of war and I'd prefer to come to the battle prepared..

Thanks for reading.  Here's an original song by Solstice.  Hope you enjoy it as much as I do.