"When my heart is overwhelmed, lead me to the rock that is higher than I." Psalm 61:2
Hope is still in the hospital. After a five day stay in the city where she is, I arrived home last night, will spend today taking care of some things, and will head back there again tomorrow. I'll try to walk you through the events of the last week, and update you on where we are now. I'll just take you through how our week played out, day by day.
Monday, May 30 -- Hope transfers to new facility. (I had posted that she was transferring Sunday night, but transport fell through and she ended up going Monday morning.) I wrap up things I need to do at home, and make plans to go to her on Tuesday. I speak to her hospital social worker, who I really like. I also get to speak to one of two doctors who will treat her while she's there. He seems knowledgeable (as much as anyone ever is in our unique situation) and comfortable making a treatment plan. He wants to increase her current med, clozaril, if possible, and if that isn't possible or doesn't work, he wants to add a new med. Her care team has talked about this med before, and already agreed before he ever mentioned it that it would probably be a good next move. It is physically hard on the body, and shouldn't be used until you get to the point where you need to, but when you get to that point, it can be a really beneficial med. Doctor orders labs to check her current clozaril level. This will tell us whether or not we can increase it.
On Tuesday, May 31, I wrote this update on Facebook: "Tonight's visit was the hardest I've had with my girl. Eleven hospitalizations in thirty-one months -- countless visits -- and this was the single hardest one. She cried the entire time, and jumped up and walked around in a panic probably four or five times in the one hour visit. She cries a lot now. She is absolutely terrified all the time. She had such a bad panic attack last night that they had to give her something to try to calm her down, which they've never had to do before. [...insert some stuff about specific staff complaints, etc. that isn't all that relevant to the overall update...] She's terrified, she's miserable, she knows (in her mind) she's dying in a strange hospital surrounded by strangers, and there isn't a thing I can do. I know she's in the only place she can get help; there's nothing we can do to fix her outside the hospital. So basically, it all just stinks. Oh, and [Isaac] cried through part of visitation, because it is just so painful to see her like that. Praying that relief for her comes soon!"
That update pretty much says it all. It was a pretty traumatic visit, and the little guy was so very shaken after watching her cry in terror for an hour. That night, they increase Hope's security level to "close obs." This is not the very highest level, because there is also a one-to-one option where a staff member has to be within arms' reach of the resident all the time. It does mean, though, that she' never allowed to be alone. Most of the day, they're all in a group (eating meals, doing therapies, having recreation times, etc.) or with a staff member (being seen by the doctor, taking meds with a nurse, doing therapy with a social worker). During the times when they are alone, though, (using the restroom, taking a shower, sleeping) Hope has a staff member with her. I'm thankful that they're taking the extra measures to make sure she's safe. Isaac says that he will never, as long as he lives, forget the way she looked. I am heartbroken for both of them.
Wednesday, June 1 -- Still no changes to meds, as clozaril level has not come back. Impatiently waiting. Visitation goes better than the night before. Her day is not significantly better overall, but she is in a calmer state of mind at the particular time we see her, and states that she did spend less of the day feeling terrified. She is sad, and is sometimes still very afraid that she's dying, but she is not at the level of constant panic that she had been. No changes to meds or anything, so this is either just a random calmer day, or the delusion is starting to lift on its own, after about a month of the worst misery she's ever experienced. I pray that it's the latter.
Thursday, June 2 -- Visit is similar to the night before, and fairly pleasant. Hope states that she is definitely feeling less afraid. She's still scared when she thinks about it, but it's not a constant fear, and she is spending more time with it not even in her mind. Clozaril level still hasn't come back. That test always takes a while. All other tests are in, though. She looks good -- blood counts are normal, liver, kidney, thyroid functions are normal, sugars and cholesterol are normal, etc. All of the things that would tell us that her body is struggling with the meds are looking okay, so the doctor says he intends to go ahead and raise her clozaril, even though the test hasn't come back.
That was a hard day. In fact, "hard day" is an extreme understatement, but I don't have words for it. She had actually had a pretty good day. The fear/delusion/paranoia that she's dying has definitely faded. Most delusions do break on their own, that this one may have pretty much run its course. She couldn't remember if she had even thought about it that day, until the point where she was sobbing, which led to her throat feeling all constricted again, and then that led to panic. However, once she got this news, she was a mess. To her, the heartbreak was over the amount of time she might need to remain in the hospital. She knew that her clozaril could be increased every three days, and that it usually only took a couple of increases to help. Once that option was taken away, she saw it as a suddenly indefinite time period that she just couldn't bear. She cried so hard that she was gagging and gasping, and feeling unable to swallow, and panicking. Such a horrible cycle. She says she can't bear being there any longer, and she just wants to come home. She says she can't bear this illness anymore, that it's not fair and she can't keep living like this. She doesn't want to have to just wait endlessly and hope that some med fixes it eventually. It is more than she can bear right now.
For us, the bad news is less about the time she'll be there. It makes us sad that it might extend her stay some, but that's not the big, soul-crushing news here. The real problem is that the clozaril is no longer working, even at -- beyond, really -- the highest dose possible. When a person with schizophrenia is "treatment resistant" or "treatment refractory" (meaning that they don't respond to traditional antipsychotics) the next move is to the "gold standard" drug clozaril, which works for many. When that doesn't work, the person is considered a "clozapine nonresponder" or "superrefactory" patient. There is no organized plan from that point. There are other ways to augment the clozaril; they can add another antipsychotic, a mood stabilizer, an SSRI, a glycerinergic drug, or ECT. As I was reading in a study this morning, though: "The evidence favoring one augmentation strategy over another is lacking; overall, adjunctive therapy is associated with only modest clinical improvement." (Quote from Schizophrenia Bulletin, 27(4):615-628, 2001) So, yeah... There are still things to try, but none offer significant hope. What we're doing now is adding a mood stabilizer. Because she has failed to respond to another mood stabilizer, we're going straight to lithium at this point. Lithium is hard on the body, and honestly, there is a good chance of it causing health problems down the road. When you get to where we are, though, you don't have many options. We need to keep her alive and as stable as possible now, or we won't even get her to "down the road." We have to hope that it helps. If it does, we accept the risks for now, and hope for the best, or hope that she won't need it long term, or hope that something new comes down the pipeline before it has caused damage. It's not pretty, but we're running out of options. If it works, the lithium would be expected to improve mood stability. This is a good thing, because it could make her happier and more functional. However, it does not solve our biggest problems. It is not an antipsychotic, and is not expected to help her hallucinations. There is some argument that an overall more stable mood could affect that some, because things like stress and extreme moods can exacerbate symptoms, but we don't expect significant improvement on that front. And while it would be helpful if it makes it feel any better in any way, it is not a real answer to the constant psychosis and debilitating hallucinations.
Saturday, June 4 -- Visitation is two hours instead of one on the weekend. Today's is mostly good. Her mood is much better than last night, as she's had some time to adjust to the situation. She's sometimes sad, but not crying or inconsolable. She says she's pretty aware at this point that she's not dying, and isn't so worried about it. This trend has become better over the last few days, and is fantastic news, as we may be pretty much through that delusion. I have to keep reminding myself how nice it is that's she's not constantly afraid. I'm so torn up about the other news that it's hard to focus on what's happening in front of me, which is my girl, mostly relaxed, playing a card game with her little brother.
Sunday, June 5 -- Hope cries through the entire two hours. She's tired of being here, and wants to go home. She wishes she at least had some idea of when she might go home, so she could at least count down and look forward to it. As it is, all she can do is wait in some awful purgatory. She is tired of being sick, being out of control of it all, and just being an unwilling passenger in this awful ride that she can't get off of. She isn't always clingy, but in this visit, she snuggles up next to me, I wrap my arms around her, she puts her head on my chest, and she cries for an entire visit. Isaac cries, too. She is so very sad that we're going back home for two days. I tell her that we have to go back, because there are some things I need to do, but that we'll only stay one day. It it almost physically painful to leave her there like that and drive away. Isaac is feeling defeated and broken, and says he just doesn't understand why this is all happening to her. I don't know what to tell him except that there is no reason. We live in a fallen world. People get sick. They didn't do anything to deserve it, but it happens. It's not a very satisfying answer, but it's the only answer I have.
Today, I am doing some various paperwork, medical and insurance stuff, household stuff, etc. I'm washing and repacking everything from our trip, so that we'll be ready to leave again in the morning. Today will be the only day Hope doesn't have someone there for visitation, and we will have just a ten minute phone call with her.
On our first round, we spent just one day in a hotel. Some friends have a vacation house about 40 minutes from the hospital where Hope is, and they offered to come down there and host us. We were able to spend four of the five days with friends, which was a huge blessing. We kept Isaac busy, and made sure he could do things he enjoys. This time, we will be in a hotel. Fortunately, though, we have a friend who grew up in that city, and can suggest things to do. On our first day there, she recommended a museum that Isaac ended up really enjoying. (And on top of that, when we got there, we were told that she had called ahead and paid for our admission!) We will keep as busy as we can during the day, and see our girl in the evening. This is our life.
This update is so, so long, but I want to touch on a couple more things. First, I want to thank everyone who has contributed to the YouCaring page that our friend set up for us. It has raised $890. Hotels in beach towns in the summer are costly, even if we're willing to go farther out of the city, and are only looking for something clean and in a safe location, and all of the things that go along with it (gas, meals, etc.) add up quickly. That $890 takes a big chunk out of our out of our costs, though. I can promise all of you that everything donated is going to this specific cause only. If it were to suddenly start growing again, and somehow managed to surpass the costs we're incurring for travel and accommodations, it would go only to Hope's hospital bills. I just want you all to know that we're grateful, and that we would not betray your kindness by using your donated funds for anything other than our girl's care and the expenses associated with it. Thank you to those who have donated, including some donors who chose to remain anonymous and at least one whose name we don't recognize, and were therefore unable to thank personally.
My last post mentioned the possibility of residential treatment, and I wanted to address that as well. It's still on the table. With the probability that we won't be able to affect her hallucinations at all, we're in a pinch. When meds fail, they start using heavy therapy to teach a person how to function with the symptoms, because they have been unable to get rid of the symptoms. For her, this will be very hard, because of the nature of her hallucinations. When she was hospitalized this time, it was partly due to the extreme distress over the paranoia/delusion that she was dying, and that is better now. But if you remember, just a month before, she was hospitalized only because the voice was making her so incredibly miserable that she was on the verge of killing herself, because she saw it as the only way to keep everyone safe. If we can't affect the hallucinations at this point, she will have to somehow cope with the voice. We don't know how that will go. So far, it has never gone well, but we've been fortunate that so far, we've always found some way to help for at least some period of time. Now we have to decide if we can take her home with really strict supervision, and see how it goes, or if we'll need to put her into a residential facility for a while, both to provide her with more frequent therapy and more intense support, and to keep her at a higher level of supervision while we see how she copes. Taking her home is terrifying, and will be incredibly stressful. Even considering longer placement is heartbreaking, and will just crush her. Please pray that we are somehow able to make this decision, and have some peace about it in whatever direction we choose to go.
Lastly, I wanted to ask for prayers for this Wednesday, specifically. We always covet prayers, but Wednesday is Hope's birthday. Last year, we were afraid that she'd be in the hospital on her birthday, but I got them to discharge her the day before. This year, there is virtually no chance at all that she'll be out on her birthday. She'll spent it there. We can't have any extra visitation that day. We can't bring her a special treat of any kind. It will be a very hard day for her. If you can help pray her through that day, I would very much appreciate it. <3
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