Movement

"Hands, put your empty hands in mine. And scars, show me all the scars you hide. And hey, if your wings are broken, please take mine so yours can open, too. 'Cause I'm gonna stand by you."          Stand by You, Rachel Platten

I might shake the very foundation of the universe if I post two days in a row, as bad as I usually am at keeping up with things. I wanted to update on what has happened since yesterday, though, because there has been at least some movement. 

On Friday, I had been in touch with another facility. It's the job of the hospital's bed search team to find a bed for Hope somewhere in the state, but sometimes it's beneficial to help them along a little. The hospital I contacted has three locations in the state, and she has been in one of them before. Last spring, when we were looking to get her through an acute facility and into a PRTF (residential) one, we used this hospital. They have both types, and we thought it would be the easiest way to make that transition if we needed to. As it turns out, we were able to stabilize her enough not to need the PRTF, and she discharged to home instead. However, knowing that it's a strong possibility again this time, it made sense to reach out to them again. Their admissions department knew that they had one female discharging that day at the one location (a couple hours from home; this is where she was last year.) She was willing to hold that bed for Hope, if they could get the hospital where she was waiting to send them a referral. I worked on that throughout the day, along with a social worker and a nurse at the hospital who helped me keep pressure on them, but the bed search team was too slow in putting her referral packet together. That bed was filled by someone else, and we would have to wait. However, I also discussed PRTF with the admissions dept at the other hospital, and got the ball rolling on that. The application and most associated paperwork was completed, faxed back to them, and passed on to the PRTF director there. The only thing they still need will come from Hope's outpatient providers, hopefully early next week. 

Today, a bed opened up at another location of this hospital group. It wasn't the location in our city, or the city a couple of hours away; it's the third location, about three and a half hours from us. However, it is still with the hospital group that we wanted. It's a good hospital, from the feedback we've heard through a couple of people we know with connections to staff there. When Hope has been a couple of hours from home, I've gone back and forth, spending a few days in a hotel, and then a day or two at home, and back again. I can do meetings at the hospital, and I can visit my girl for a few days at a time, and then I can come home for a little bit to do what I need to do here before heading back again. This is trickier. Three and a half hours is not an easy drive. Hospitals understand that when a person is transferred far from home, family can't always come, and they're willing to do most things by phone, with at least one or two family meetings in person. However, I just can't leave my child that far from home, with no one nearby, no one to come during visiting hours, and just a ten minute phone call home each day. I want to be there. I want to be able to do hospital meetings in person, and see her when I can (even if that's only an hour a day in a psych ward), and for her to know that no matter what, we'll do anything in the world to just be there for and with her. 

Financially, this stinks. It is way too far to drive back and forth, so it means staying there for some period of time. Hotel, gas, food, etc. adds up fast, and especially when it's piling on top of a big stack of hospital bills. This just isn't the time for thinking about those things, though. You do what you have to do, and think about that later. Yes, it adds up quickly. This is even truer in a beach town in the summer, when hotel rates shoot up. But what choice do we have? She needs help, and this is the best place to get it right now.

Enter the world's best friends. I shared on FB that Hope would be transferring to *insert city here* and that it was a less than ideal situation, financially speaking. Within minutes, a couple of people said that they knew people in that area, and would ask if they had any insider tips on where to stay. Within another hour or two, there were a number more friends who said they'd ask people in that area. I had replies on my post, private messages, and texts telling me to try this, or check out this link, or contact this person. So far, we haven't gotten any solid leads on anything that would be better than just booking ourselves online, but I know there are still people out there working on it. And honestly, even if nothing comes of it, I am so touched by the effort.

While all of this was going on, I got this from a sweet friend:I know you would never, ever, ever want this. but I want to start a YouCaring donations page for you guys. So many people love you and want to help, and this is a tangible way for them to help. You will need it for gas cards and restaurant gift cards and things like that. But I won't do it if you don't want me to, so just say yes or no when you get a second. <3 to all of you. She's right that the idea made me uncomfortable. Touched, but uncomfortable. We've made it through ten previous hospitalizations, four of them out of town, and have managed to make it work. But then I started really thinking it through. It does add up so quickly. There are bills coming in from last month's hospitalization, and bills from this one will follow soon behind. Yes, we've been fortunate enough that we've always done whatever is best for Hope at the time, and never had to decline or alter treatment because of cost. On the other hand, we started talking/thinking/worrying about how much this was all going to cost before even hanging up from the call where they told us they'd found a bed. Like it or not, the financial side of this is a stressor. And so, I accepted the offer from the friend to set up a YouCaring page. Several people have donated already, and it just blows my mind. I don't personally know three of the five who have donated, they're people who know about us through friends or family. How big must the hearts of these sweet strangers be, to give their own resources to help us out? I am definitely still uncomfortable in this position, but also so much in awe of it. I can't even wrap my mind around all of the ways in which we've been shown kindness through our sharing of Hope's struggle. 

Our current plan looks something like this: Hope is in transit now. Transfer between psych facilities happens by sheriff. (That was so hard the first time, knowing that she was in the back of a cruiser. If they have only her, she'll ride unrestricted in the back of the car or van. If they are transporting more than one person at a time, they cuff them to be sure everyone is safe. That breaks my heart, and I pray that it was just her this time.) She should arrive there around 10:00 tonight, and the facility (with whom I've already spoken) will call to let me know that she has arrived. We will probably not head there tomorrow. I have many things I need to do in order to be ready to be out of town, including getting some additional info for the PRTF folks and the insurance folks. The hospital won't need us, as they never schedule meetings or anything on the first day there, and especially because it's the Monday of a long weekend. And Hope knows we won't be there to visit on Monday, that we'll just talk by phone that day, and that we'll be there Tuesday. On Tuesday, the little guy and I will head to where our girl is. We'll stay in a hotel there, and try to find parks and things to keep my extrovert occupied for the huge chunks of time we can't be at the hospital. (Most psych hospitals only allow an hour of visitation each day. It makes sense when you consider that they're supposed to be focusing on themselves, and that some families are not good influences and would hinder treatment. But it honestly just really stinks.) We'll plan to be there until Sunday. Isaac has an event that he's really looking forward to on Monday, and being gone from home for more than that at once gets difficult anyway. So, we'll come home Sunday spend Monday and maybe even Tuesday here, and go back again at least by Wednesday (which is Hope's 15th birthday.) I don't know how long this stay will last. The average stay is seven to ten days, though she's spent as much as three weeks in the hospital before. We'll plan to spend most of our time there, with just a day or two at home each week, for as long as she's there. 

I don't know what happens next. The best case scenario is that she's quickly stabilized with a quick tweak or two of her meds. We'd be a little hesitant to believe that everything is all better even if she looks more stable, considering how quickly her meds failed again after the last adjustment. But you never know, and we might try bringing her home if she looks absolutely great. There is also a chance that she'll go into a residential treatment facility after this acute hospitalization, especially if we're unable to get a response to the things we're able to try while she's there. If she doesn't look so perfectly healthy that home is the obvious choice, or so incredibly unwell that PRTF is the obvious choice, then we'll have to make a hard decision. This decision will ultimately be ours, but will be made with input from her entire care team. We would appreciate prayers for guidance for all of us.

Thank you all for everything. I have no words for how touched my heart is by all of the response we continue to get to our girl's story. None of us ever asked to live this struggle, but I am at least thankful for the incredible glimpse at the very best in humanity that we've seen through it. <3