"When enemies are at your door, I'll carry you away from war, if you need help, if you need help. Your hope dangling by a string, I'll share in your suffering, to make you well, to make you well." Gone, Philip Phillips
Another month has passed with no change in symptoms, and little change in circumstances. I'll try to catch you all up on what has happened since I last updated. I'll warn you that this is going to be long. I don't update all that often, and our life moves very quickly sometimes. I figure it's better to tell more, though, and you can read as much as you like. I'm breaking this post down into sections, to make it a bit easier to follow.
Since my last update:
Since my last update:
Baby girl spent two weeks in the hospital. Three changes were made to her meds, and she showed no response at all. The only thing that was different this time is that she stuck to her commitment to be honest with us about symptoms, and didn't just say that she was feeling better to try to get out. Every day, she reported that she felt exactly the same as the day before. It was disheartening to see that she wasn't responding to med changes, but at least we got honesty from her this time.
Her discharge was pretty abrupt, and illustrates how difficult it is to get any help in our current mental health system. The psychiatrist assigned to her in the hospital was one who had treated her before, and we were comfortable with him and confident in his skills. He was not anywhere near ready to talk about her release yet, as she still had the exact same symptoms that brought her there. He was off for two days on the weekend, and she was seen by another doctor who also didn't talk about discharging anytime soon. Then, on Monday morning, her regular doctor had a personal issue of some kind and wouldn't be able to come in for a few days. She was assigned to another doctor was called in to cover, and this doctor decided on the spot (after reading her chart, but before ever meeting her!) that she'd be discharged the next day. He reasoned that while she was still hallucinating, she was no longer as dangerous. She came in with command hallucinations; specifically, her voice was telling her to kill people. Once in the hospital, it stopped saying that very often, and mostly told her to do things like lie about the voice, say the meds are working, get them out of there, etc. When asked about it, she said that it always says those things when she's hospitalized, and when she gets out, it resumes its regular stuff. However, this doctor said that because she was having few homicidal command hallucinations, he couldn't justify keeping her there. Despite the fact that we knew she was no better, and that her symptoms would return to their usual state as soon as she was on the outside, she was discharged. Her regular psychiatrist didn't agree with that move, and told us that if we had any hesitation about taking her home, we could just head straight to any ER. She still met all criteria for immediate crisis hospitalization, and would've been admitted. We felt okay just taking her home and keeping her well-supervised while we worked out the next steps, though.
What do we do now?
What we did get from the hospital is a strong recommendation for residential treatment. We knew it was coming. Her outpatient psychiatrist and therapist had both told us that we had arrived at that place, and we weren't surprised for the hospital psychiatrists to say the same thing. We have been unable to stabilize her for almost two years and she can't just continue this way. We have to do something, and there aren't really any other options. Her eight hospitalizations over the last eighteen months have all been in acute facilities, and they've done nothing for her. We were told to pursue treatment at a residential facility, which is a place designed for stays of months rather than days or weeks. It's heartbreaking for us to have to think about her being away for longer, but everyone who treats her agrees that outpatient is not enough for her right now, and that we must do something else.
What we did get from the hospital is a strong recommendation for residential treatment. We knew it was coming. Her outpatient psychiatrist and therapist had both told us that we had arrived at that place, and we weren't surprised for the hospital psychiatrists to say the same thing. We have been unable to stabilize her for almost two years and she can't just continue this way. We have to do something, and there aren't really any other options. Her eight hospitalizations over the last eighteen months have all been in acute facilities, and they've done nothing for her. We were told to pursue treatment at a residential facility, which is a place designed for stays of months rather than days or weeks. It's heartbreaking for us to have to think about her being away for longer, but everyone who treats her agrees that outpatient is not enough for her right now, and that we must do something else.
The process:
Pursuing residential treatment has been a stressful and exhausting experience, and we're still not there. First of all, we were told that private insurance rarely approves it. We dove in anyway, with no choice but to try. We quickly discovered that, for one reason or another, none of the few places in our immediate area would be possible for us, and that we'd have to expand our search and accept the possibility of her being farther away from home. I made calls to many places, talked to many people, and found dead end after dead end. However, there were a few people along the way who were able to tell me that while they couldn't help, they could give me contact info for another person or another facility. I've been so blessed by the people who have gone out of their way to try to help us, when it was really only their job to say that we weren't a right fit for them, and could've just moved on from there. There have been more than a few people along our way who have made phone calls, sent emails, done whatever networking they could do to try to help this unique kid.
Pursuing residential treatment has been a stressful and exhausting experience, and we're still not there. First of all, we were told that private insurance rarely approves it. We dove in anyway, with no choice but to try. We quickly discovered that, for one reason or another, none of the few places in our immediate area would be possible for us, and that we'd have to expand our search and accept the possibility of her being farther away from home. I made calls to many places, talked to many people, and found dead end after dead end. However, there were a few people along the way who were able to tell me that while they couldn't help, they could give me contact info for another person or another facility. I've been so blessed by the people who have gone out of their way to try to help us, when it was really only their job to say that we weren't a right fit for them, and could've just moved on from there. There have been more than a few people along our way who have made phone calls, sent emails, done whatever networking they could do to try to help this unique kid.
What we discovered was that even if a facility looked good enough for us to consider and was in-network with our insurance, we still couldn't get them to consider her. We learned that on top of criteria that patients must meet for admission, places also have lists of exclusionary criteria. In other words, if you have anything on that list, they turn you away. Once we knew to ask about that right away, we discovered that there wasn't a single place we could find that didn't exclude active psychosis. See, residential facilities are designed for longer stays, but are actually a step down in security level. The proper procedure is to use an acute facility to stabilize the person, and then, if necessary, move on to a residential facility to provide the additional support or resources they need before going back to outpatient. An acute facility should be able to treat and stop psychosis, and after that point, you can use residential treatment. What happens, then, when a person has psychosis that won't respond to anything, has been through countless acute hospitalizations, and still has psychosis that hasn't changed in nearly two years? The acute facilities can't keep a person for very long; they're not designed for that. Residential facilities can help with many things, but something as serious as current psychosis isn't their thing. The type of places that people would've previously called institutions, that were real hospitals designed for long stays, are almost nonexistent now, as it is believed that most people do best in community-based treatment. There simply is no place for a person like Hope.
A possibility:
After what felt like an endless series of doors slammed in our faces, we finally found a possibility. Through a chain of networking contacts, we found a person who was high up enough in an organization that he was able to get someone to agree to take a look at Hope's case. She meets exclusionary criteria for this facility, but the clinical director could choose to make an exception, so we hung our hopes on that. We put together a huge file of clinical data; her therapist wrote a long, exhaustive letter, and had a phone consultation to make our case for why she needs this; we went through channels higher than the ones that would've normally stopped us at the initial admissions screening. To our great relief, they agreed to take her... conditionally, though. That's one huge hurdle that has been cleared, but there are more.
After what felt like an endless series of doors slammed in our faces, we finally found a possibility. Through a chain of networking contacts, we found a person who was high up enough in an organization that he was able to get someone to agree to take a look at Hope's case. She meets exclusionary criteria for this facility, but the clinical director could choose to make an exception, so we hung our hopes on that. We put together a huge file of clinical data; her therapist wrote a long, exhaustive letter, and had a phone consultation to make our case for why she needs this; we went through channels higher than the ones that would've normally stopped us at the initial admissions screening. To our great relief, they agreed to take her... conditionally, though. That's one huge hurdle that has been cleared, but there are more.
Where are we now?
Unfortunately, it's not a quick or easy process. There are multiple steps of paperwork and red tape to get through. Right now, we're paused at the step where they have to get permission from both states for her to get treatment out of state. This is something that not every state requires, but this facility is one that does, so our longest step is waiting for two state agencies to approve it. After we get clearance from both states, we'll be getting pretty close. Well, except that one of the largest hurdles yet is still to come. We still have to get insurance approval. Now, I thought going into this that the insurance step would come early. That made sense in my inexperienced mind. However, the only thing they do in the early steps is confirm that your insurance plan does have coverage for this type of hospitalization. Actually getting approval comes right at the end, because once they get pre-certification, they have to admit within 24 hours. That makes sense, because how can you be certain that a patient still needs it if you approved them weeks ago? So, while I understand why it has to happen that way, it's stressful. We have gone through weeks of trying to find placement, jumping through hoops in the placement process, etc., and we won't know until the very end if our insurance company will allow it. She is such a unique case, with such a rare and severe illness that we are hanging on to hope that she'll be approved. We have a case manager with the insurance company, and she has already made notes in her chart about residential treatment being suggested, and why it's considered necessary at this point, and we hope that her advocacy will help us when we get to the point of actually seeking the approval. After that, there is actually still one more hurdle. They've accepted her based on the clinical data they've received, communication with her therapist, etc., but they have never seen her. When we have everything else in place, we have to take her to the facility (about four hours away), and have her evaluated there. They can still say, after seeing her, that their program isn't right for her. That would be devastating, as we have no other options in sight. Acute facilities can't keep her long enough to help, residential facilities don't want her, and long-term facilities are few and far between, and not a step we want to take right now anyway. Right now, all our hopes are on getting her into this facility.
Unfortunately, it's not a quick or easy process. There are multiple steps of paperwork and red tape to get through. Right now, we're paused at the step where they have to get permission from both states for her to get treatment out of state. This is something that not every state requires, but this facility is one that does, so our longest step is waiting for two state agencies to approve it. After we get clearance from both states, we'll be getting pretty close. Well, except that one of the largest hurdles yet is still to come. We still have to get insurance approval. Now, I thought going into this that the insurance step would come early. That made sense in my inexperienced mind. However, the only thing they do in the early steps is confirm that your insurance plan does have coverage for this type of hospitalization. Actually getting approval comes right at the end, because once they get pre-certification, they have to admit within 24 hours. That makes sense, because how can you be certain that a patient still needs it if you approved them weeks ago? So, while I understand why it has to happen that way, it's stressful. We have gone through weeks of trying to find placement, jumping through hoops in the placement process, etc., and we won't know until the very end if our insurance company will allow it. She is such a unique case, with such a rare and severe illness that we are hanging on to hope that she'll be approved. We have a case manager with the insurance company, and she has already made notes in her chart about residential treatment being suggested, and why it's considered necessary at this point, and we hope that her advocacy will help us when we get to the point of actually seeking the approval. After that, there is actually still one more hurdle. They've accepted her based on the clinical data they've received, communication with her therapist, etc., but they have never seen her. When we have everything else in place, we have to take her to the facility (about four hours away), and have her evaluated there. They can still say, after seeing her, that their program isn't right for her. That would be devastating, as we have no other options in sight. Acute facilities can't keep her long enough to help, residential facilities don't want her, and long-term facilities are few and far between, and not a step we want to take right now anyway. Right now, all our hopes are on getting her into this facility.
Why residential?
So, all of that explains the process, but just what are we trying to do for her, anyway? I've had a few people ask me what we hope a residential stay will do for her. That's hard to answer. Our biggest hope is still that she will respond to medication. That really is the only way to manage schizophrenia. Before antipsychotics existed, schizophrenia was debilitating, and those afflicted with it lived in institutions. Antipsychotics are the really the only way to manage the psychotic symptoms, and even with those under control, most individuals can't live completely independently, thanks to the other associated symptoms. If we can't even control the psychosis, though, things get much worse. If you've been following us for long, you know that she's proven to be med resistant, and that we've already moved to using the one med they can use in some cases of med resistant schizophrenia. Even with recent increases, that is doing nothing for her. We're not hopeless yet, though. If we get the right doctors on our side, we can still increase her dose further. Her current psychiatrist won't, and at least one of the psychiatrists we saw in the hospital wouldn't. Some still will, though. It's tough, because this med is used so rarely, and almost never in people her age. However, we have to be aggressive in our treatment, because her illness is so aggressive. The longer a person is left in psychosis, the less chance there is of it ever responding to anything. We need to push this med as high as we can before we give up on it working. We realize, though, that at this point, it may not work. If we can't get the psychosis under control, then we have to teach her to live the best she can with her symptoms. The frequent and intensive therapy, and structured setting, of a residential treatment program is a starting point for that. I guess the answer is that we don't know for sure what we hope to accomplish. All we know is that everyone who has treated her believes that she is no longer okay to be only outpatient right now. We've been doing the exact same thing with no success for some time now, and all we can do is try something different and hope it helps.
So, all of that explains the process, but just what are we trying to do for her, anyway? I've had a few people ask me what we hope a residential stay will do for her. That's hard to answer. Our biggest hope is still that she will respond to medication. That really is the only way to manage schizophrenia. Before antipsychotics existed, schizophrenia was debilitating, and those afflicted with it lived in institutions. Antipsychotics are the really the only way to manage the psychotic symptoms, and even with those under control, most individuals can't live completely independently, thanks to the other associated symptoms. If we can't even control the psychosis, though, things get much worse. If you've been following us for long, you know that she's proven to be med resistant, and that we've already moved to using the one med they can use in some cases of med resistant schizophrenia. Even with recent increases, that is doing nothing for her. We're not hopeless yet, though. If we get the right doctors on our side, we can still increase her dose further. Her current psychiatrist won't, and at least one of the psychiatrists we saw in the hospital wouldn't. Some still will, though. It's tough, because this med is used so rarely, and almost never in people her age. However, we have to be aggressive in our treatment, because her illness is so aggressive. The longer a person is left in psychosis, the less chance there is of it ever responding to anything. We need to push this med as high as we can before we give up on it working. We realize, though, that at this point, it may not work. If we can't get the psychosis under control, then we have to teach her to live the best she can with her symptoms. The frequent and intensive therapy, and structured setting, of a residential treatment program is a starting point for that. I guess the answer is that we don't know for sure what we hope to accomplish. All we know is that everyone who has treated her believes that she is no longer okay to be only outpatient right now. We've been doing the exact same thing with no success for some time now, and all we can do is try something different and hope it helps.
How long?
The other question I get often is, "How long will she be away?" I wish I had more answers for everyone, but we really don't know. This is all brand new to us; while it will be her ninth hospitalization, it is the first of this type. The average length of stay at this facility is three to six months. It could be shorter, especially if our insurance company isn't cooperative, if they determine that she's not progressing there or isn't right for their program after all, etc. It also could be longer than that estimate, potentially up to a year. I really don't expect that, because I can't imagine our insurance company allowing it. They'll require the hospital to justify her continued need every seven days, and I can't see them approving it for too long. There's really no way to say, though. Everything about this is foreign to us. All I can say is that I hope she's home soon, but more than that, I want her to be well, and we'll do anything we can to strive for that end.
Gratitude:
I can't begin to express how thankful I am for all of the amazing people in our lives. Countless people have used their time and energy networking with everyone they know that might be able to help us. There have been so many instances of "my old college roommate/cousin/former colleague/church friend is in this field" and "I know someone who knows someone who I think might have some connections to something psych related." Hope's therapist and psychiatrist have both spent their own time and energy trying to find a way to help her. This time around, some really amazing friends took it on themselves to coordinate assistance for us, knowing that we're not ever going to ask for help from anyone. Friends set up a meal train, and we've had a few meals a week delivered to our home, freeing time and energy to focus on other things. Some really cool guys my husband knows decided to chip in and buy a new toy for him and little man, just to add some extra fun and levity to our home. A friend contacted our church (where we have only attended for six months or so, and therefore only know a handful of people, and have only spoken to the pastor and youth pastor about Hope), and the church put out an email to leaders of life groups. These groups have prayed for us, brought meals, offered to do things like yard work to help us out. Friends have offered to run errands, take the little guy for a while, etc. One beautiful friend, who was there right after I got a call from the hospital about the discharge we knew was too early, just cried as I told her. Is there anything more beautiful than that type of raw, honest emotion? Honestly, we've just been blown away by how many people have stepped up and offered to help shoulder our burden this time around. I'll admit that it has often caused me to feel uncomfortable. I love to pitch in and help others out, but I am really uncomfortable being on the other end of that. I'm doing my best to just feel the gratitude and dismiss the discomfort, though. The world is full of so many amazing people with beautiful hearts, and I am so incredibly thankful for each person who has willingly stepped into our chaos and offered to stand with us. My heart may be awfully battered right now, but it is also so, so full.
Prayers:
People ask how they can pray for us. First of all, every prayer is appreciated. Knowing how many are carrying our family in their hearts and pleading on our behalf is humbling. For those of you who like to pray specifically, we ask first of all for healing. We know that science doesn't have a cure for schizophrenia, but we know that God is bigger than all of that. We don't know what the plan is for Hope's life, or for ours, but we pray that if it is in His will, that he will bring healing. We ask for guidance. It's hard to know what to do in such unfamiliar territory, and Hope's case is so unique that we can't really even find professionals who know what to do. No one on her care team has ever treated someone like her, and our family has never navigated these waters, so we live in constant uncertainty of what to do next. We ask for peace. We are exhausted, and still so far from anything that looks like rest. We ask for patience. Answers come slowly, and sometimes not at all, and it is so hard to just wait, when all we want is to know how this is all going to play out. We ask for prayers for our sweet boy, "Isaac" as he is known on this public blog. I don't talk much about him here, as he's not as comfortable with sharing as Hope is, but he has again been struggling. This is a hard life we're living, and while he sometimes seems to take it all in stride, he has been hit with some very difficult periods as well. We're in a hard time now, and ask that you keep him in your prayers. Lastly, as always, pray for peace and comfort for Hope. I can't imagine living just twelve normal, healthy years, and then having your mind turn on you. I can't imagine learning that you have a very serious illness that significantly decreases your chances of ever being able to care for yourself or live a normal life. I can't imagine being essentially a bystander to your own life, as you watch everything around you and inside you change, and finding yourself unable to change it and too detached to even care most of the time. As hard as it is to be us, I can't imagine how it feels to be her.
Thank you all, once again, for being a part of our story. It's a crazy life, and I would understand if people ran from the chaos. Some have, but more often, people have willingly stepped into the chaos. I am still blown away every time someone (especially those we've just met or don't know well) asks how they can love us, serve us, help shoulder our burdens. As I said before, our hearts are very full. <3
I'll try to update again as soon as we know anything newsworthy. We hope that there will be progress on the residential front within the next week or so, and when there is, I'll be sure to fill you in on the details.
The other question I get often is, "How long will she be away?" I wish I had more answers for everyone, but we really don't know. This is all brand new to us; while it will be her ninth hospitalization, it is the first of this type. The average length of stay at this facility is three to six months. It could be shorter, especially if our insurance company isn't cooperative, if they determine that she's not progressing there or isn't right for their program after all, etc. It also could be longer than that estimate, potentially up to a year. I really don't expect that, because I can't imagine our insurance company allowing it. They'll require the hospital to justify her continued need every seven days, and I can't see them approving it for too long. There's really no way to say, though. Everything about this is foreign to us. All I can say is that I hope she's home soon, but more than that, I want her to be well, and we'll do anything we can to strive for that end.
Gratitude:
I can't begin to express how thankful I am for all of the amazing people in our lives. Countless people have used their time and energy networking with everyone they know that might be able to help us. There have been so many instances of "my old college roommate/cousin/former colleague/church friend is in this field" and "I know someone who knows someone who I think might have some connections to something psych related." Hope's therapist and psychiatrist have both spent their own time and energy trying to find a way to help her. This time around, some really amazing friends took it on themselves to coordinate assistance for us, knowing that we're not ever going to ask for help from anyone. Friends set up a meal train, and we've had a few meals a week delivered to our home, freeing time and energy to focus on other things. Some really cool guys my husband knows decided to chip in and buy a new toy for him and little man, just to add some extra fun and levity to our home. A friend contacted our church (where we have only attended for six months or so, and therefore only know a handful of people, and have only spoken to the pastor and youth pastor about Hope), and the church put out an email to leaders of life groups. These groups have prayed for us, brought meals, offered to do things like yard work to help us out. Friends have offered to run errands, take the little guy for a while, etc. One beautiful friend, who was there right after I got a call from the hospital about the discharge we knew was too early, just cried as I told her. Is there anything more beautiful than that type of raw, honest emotion? Honestly, we've just been blown away by how many people have stepped up and offered to help shoulder our burden this time around. I'll admit that it has often caused me to feel uncomfortable. I love to pitch in and help others out, but I am really uncomfortable being on the other end of that. I'm doing my best to just feel the gratitude and dismiss the discomfort, though. The world is full of so many amazing people with beautiful hearts, and I am so incredibly thankful for each person who has willingly stepped into our chaos and offered to stand with us. My heart may be awfully battered right now, but it is also so, so full.
Prayers:
People ask how they can pray for us. First of all, every prayer is appreciated. Knowing how many are carrying our family in their hearts and pleading on our behalf is humbling. For those of you who like to pray specifically, we ask first of all for healing. We know that science doesn't have a cure for schizophrenia, but we know that God is bigger than all of that. We don't know what the plan is for Hope's life, or for ours, but we pray that if it is in His will, that he will bring healing. We ask for guidance. It's hard to know what to do in such unfamiliar territory, and Hope's case is so unique that we can't really even find professionals who know what to do. No one on her care team has ever treated someone like her, and our family has never navigated these waters, so we live in constant uncertainty of what to do next. We ask for peace. We are exhausted, and still so far from anything that looks like rest. We ask for patience. Answers come slowly, and sometimes not at all, and it is so hard to just wait, when all we want is to know how this is all going to play out. We ask for prayers for our sweet boy, "Isaac" as he is known on this public blog. I don't talk much about him here, as he's not as comfortable with sharing as Hope is, but he has again been struggling. This is a hard life we're living, and while he sometimes seems to take it all in stride, he has been hit with some very difficult periods as well. We're in a hard time now, and ask that you keep him in your prayers. Lastly, as always, pray for peace and comfort for Hope. I can't imagine living just twelve normal, healthy years, and then having your mind turn on you. I can't imagine learning that you have a very serious illness that significantly decreases your chances of ever being able to care for yourself or live a normal life. I can't imagine being essentially a bystander to your own life, as you watch everything around you and inside you change, and finding yourself unable to change it and too detached to even care most of the time. As hard as it is to be us, I can't imagine how it feels to be her.
Thank you all, once again, for being a part of our story. It's a crazy life, and I would understand if people ran from the chaos. Some have, but more often, people have willingly stepped into the chaos. I am still blown away every time someone (especially those we've just met or don't know well) asks how they can love us, serve us, help shoulder our burdens. As I said before, our hearts are very full. <3
I'll try to update again as soon as we know anything newsworthy. We hope that there will be progress on the residential front within the next week or so, and when there is, I'll be sure to fill you in on the details.
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