We were able to bring Mary home from the hospital on Monday afternoon! Praise the Lord! She was so happy to see her family, pets, and friends, and to sleep in her own bed again. So far, she is holding up okay. I do not think that she is completely stable. I still see some edginess in her. She is still manic, but she is a happy manic right now. I will take every minute of happy, joyful Mary that we can and worry about the crash that follows if and when it happens later. Mark was able to come home from West Virginia for the release, which was so great! She was able to go to school for the "big dig" on Tuesday and is going on a field trip with her class today. And some of the best news we received was that we do not have to take her back for PHP (partial hospitalization program) unless this week goes horribly. The doctor recognized that what we are dealing with is mostly medical, not behavioral. When Mary is stable, the behaviors are not a problem.
The new anti-anxiety medication that they started her on has the potential to make her cycle more, not less, but hopefully will at least help her deal with the obsessive anxiety that has been triggering these horrible melt downs and suicide threats. It can take up to 3 months to see the full effect of the medication, and it is possible that she will have to go up to a higher dosage to get the most benefit out of it. We are hoping that she will stay stable long enough for the medications to kick in and also that she will be able to apply some of the new coping techniques that she learned while in the hospital. For now, we are just extremely grateful for all the prayers, support, and help that everyone gave to us, and to have our daughter back under our roof.
Saturday, April 24, 2010
As far as we know, Mary will be coming home on Monday. I am very excited to have her back home, but also a little anxious. I am approaching it with a little bit of trepidation. I think my biggest concern is the fact that as of today (Saturday) they have not done anything to capture the mania. They have started her on medication for anxiety, which I do think will help, but unless we stop the cycling, I am afraid that we are going to end up right back in there. Maybe I am wrong? Maybe the anxiety is what is causing all the issues? Maybe the anti-anxiety medication will also stop the cycling? I just don't know, partly because there has been so little communication from the hospital. It is very frustrating!
Overall, Mary seems to be doing well. She has made some friends and is learning some new coping skills. She is happy just about every time we talk to her. We have noticed that she still seems manic a good portion of the time... almost giddy. The nurses and counselors don't seem to notice that so much. They have said that she is engaging in the activities, and her behavior is very appropriate. What I don't think they realize is how good she is at maintaining control of herself in school type situations. Typically she will hold it all inside until she is in a safe place (i.e. home, our car, etc.) and then she can't hold it in anymore. She feels the pressure of being different and having everyone look at her while she is raging mad. She has had one visit to the "quiet room" and she doesn't want to go back there!
She has lots of questions about what will happen after the hospital. They are good questions. Unfortunately, I don't have very many of the answers because, again the lack of communication. What we THINK is going to happen is that she will come home on Monday, go to school for a special field day (which she has been looking forward to all year) on Tuesday, and then return to the hospital on Wednesday for what they call the partial hospitalization program (PHP). That schedule may vary a little bit as her class is supposed to go on a field trip on Wednesday and she would like to be there for that as well. So, she may not go back for the PHP until Thursday, but we will have to get the doctor's approval on that one. I am not sure how long the PHP will last. We have been told that they usually take it a week at a time, which gives them more time to observe her and more time for her to ease back into family/school life. Since we will be starting the middle of the week, I don't know if they will say just come the rest of the week and be done, or come for the rest of the week and the whole following week, or what? I guess it will all depend on how well she does at the adjustment.
She was funny the other night as she was asking me questions about PHP... she said that one child had been in PHP for 4 weeks already. She was concerned that she would not be allowed to go back to school to see her friends, and that with the PHP she would have not much down time or time to play with friends in the neighborhood (we have to be at the hospital at 8:30 and pick her up at 3:15, and then there is an hour travel time each way, so that is a valid concern!). I was trying to tell her that how long she has to continue the PHP is dependent mostly on how well her medications are working to help her control herself. If she was raging and losing control, then she was going to have to be in the program longer. She said, "Well everyone should be allowed at least one rage a week!" Oh boy! I tried to explain that if her medications are working properly, then she won't feel the need to rage. It is okay to be sad, mad, happy, etc., but to lose control like she has been is NOT okay. She asked if it was okay to lose control once a month? Once every 2 months? Okay, how about once a year?
I love that girl and can't wait to see her healthy again. To have her back home will be so wonderful. When I think of all that she has to overcome everyday to function, it just blows me away. I don't have her strength. Her compassion for others, for animals, for any living thing is amazing. She is my hero!
Wednesday, April 21, 2010
Sorry it has been so long since I updated everyone. It has been a really crazy 5 days with lots of trips (80 miles round trip) to the hospital, meetings with social workers, phone calls with insurance, etc., etc.
Here are just a few of my "top ten" notes that I have been trying to keep stored in my befuddled brain for future reference. Of course I hope that I never have to use them, but the likelihood of that is pretty slim. So, without further ado...
1) If at all possible, don't admit to a psychiatric hospital on a Friday or Saturday. Most likely the doctor that will be assigned to your case will not see your child until Monday morning and there just seemed to be LOTS of confusion, medical mix-ups, and bad communication between the hospital and the home.
2) Keep good records of the medications that have been tried prior to admitting your child to the hospital. If possible list the start date, dosage amount, side effects, benefits seen, and date stopped. And of course try to keep the list to 1 page so that the doctors can actually have time to read over it.
3) Try to stay flexible. Enough said on that one.
4) Try to remember that the end result will be worth the frustration.
5) One hour goes by so fast! Enjoy every moment of those visits.
6) Psychiatric wards and strings don't mix. They won't let you have any clothing with drawstrings, spaghetti straps, laces, or shoe strings.
7) Letters and pictures from friends are priceless! As is paper and pencils to be able to write back to them.
8) Those therapy dogs are great! It really cheers up the kids to be able to snuggle and play with a furry friend.
9) Accept any help offered with meals and childcare for the other kids in the family. Wow, have you all been great! I don't know how we would be making it through this week without your help.
10) Remember who is in control. He has our ultimate good in mind. He never promises that the road we walk will be easy, but He does promise to be there with us guiding us every step of the way.
My theme song for this week has been Jeremy Camp's song "There Will Be a Day". In fact that is the ringtone set on my phone for whenever the hospital or any of the doctors call. I do believe that there will be a day when we will have no more tears, no more pain and no more fears. I long for that day for my child. I know we won't see it fully here on this earth, but we have the hope of it in heaven. And I am so very thankful for doctors, medications, friends, and family who give us just a taste of what we have to look forward to.
Saturday, April 17, 2010
I am thinking a little more clearly than I was last night, so I thought I would take a minute and reflect back on our experiences yesterday and today. I still think that we have made the best decision. We were able to visit Mary today for an hour and she seemed overall happy and adjusting well to her new environment. She is making friends. She was really hoping to have a roommate, but doesn't, so this is a matter to take to the Lord in prayer. We are praying for someone that she can bond with and be able to form a good friendship with while she is there. There were a few things we were not happy about (and she wasn't either), but hopefully some good communication between us, our regular doctors, and the nurses on staff there has resolved those issues.
Now for my reflections on yesterday... my first impression when we got to her floor was that all of the kids there seem very "normal". It was like being in any camp/daycare type of facility except that the wards are locked down so you can't get in or out without a key and going through metal detectors and security. The kids seemed happy. The walls were painted bright and cheerful with colorful murals everywhere. It was not ANYTHING like I had pictured it in my mind.
We did over hear some group therapy going on while we were filling out the millionth piece of paperwork and answering the same question for the zillionth time. I think that the therapy will be intense and there will certainly be times when she doesn't like what they are talking about. But at the same time, I think that they purposely lead the kids down those tough roads so that they can learn how to deal with those bad feelings in a safe environment. It is not unlike some of the training we went through before we went to the mission field.
God is definitely trying to address my own pride these past few days. I did show up in the ER with Mary still in my pj's with no shower, makeup, or having even brushed my hair or teeth. They saw me at my finest??? NOT! For now, showers are a luxury that we may or may not have time for, makeup is useless because I will just cry it all off, and who has time or energy to worry about what I am going to wear or if my hair is fixed. There will be time for all of that later after she is healthy again. And my house will just have to suffer as well. There will be dog hair on the carpet and the bathrooms will not be cleaned. And I am okay with that!
So, there you have just a few of the million thoughts floating through my mind at any given moment. Overall I am at peace. God is good all the time, and all the time God is good!
Friday, April 16, 2010
Our day started out with a bang this morning with me chasing Mary down the streets of our neighborhood, praying she would not jump out in front of a moving car. We ended up calling 911 for help in transporting her to the hospital. That was by far the hardest call I have EVER had to make!
I am too drained and weary right now to post much, but the short story is that she was transported by ambulance to the nearest hospital ER where they did sedate her, draw her blood to check her medication levels and then had a psych consult. After several hours of waiting, she was transported to the closest psychiatric hospital that accepts children (an hour away from our home). Several more hours of waiting, lots and lots of paperwork, and she is safely delivered into their hands. She was comfortable when we left her. Walking away from that hospital was very hard, but we are trusting that we have made the best decision. We do not know how long she will be an patient there. It could be anywhere from 3 - 10 days, depending on how long it takes to stabilize her. And then we will probably have to be part of a partial hospitalization program where she will come home to sleep, but be taken back to the hospital during the day for all the therapy sessions, etc.
I will try to keep things updated on here as best as I can. Thanks in advance for all the prayers! I am trying to rest in the arms of the One who holds my daughter as well.
Saturday, April 10, 2010
Overall this has been a good spring break week. It has been really nice to sleep in a little later, play a little longer, and generally relax a little more. Mark and the older kids have been gone most of the week with the youth group on a trip. We spent a lot of time with friends and enjoyed going to the park (although all the moms were freezing), going roller skating, playing in the sprinkler, and eating Mayfield ice cream. We needed this break in the roller coaster ride, and I am very thankful for every good moment that we had.
Last week was not so peaceful... We had a psychiatrist appointment on Tuesday and Mary broke down twice while we were in seeing the doctor. Her blood pressure was low, her heart rate was really high and she was acting very confused and frustrated. By the time we got home, she was complaining of a headache and being dizzy and then before bed she said that her throat had been hurting. When I went in to wake her up the next morning, I was supposed to take her pulse and see what her resting heart rate was. It was really, really high and she said she had not slept all night because she had been having nightmares. She was also running a fever. I called the psychiatrist and she told us to stop giving her the seroquel immediately because that could be causing the heart rate increase. I took her to the family doctor and we got a few raised eyebrows over her heart rate being so high. Turns out she had strep throat, which could be dangerous because of the chance of developing a rash with it. One of the medications she is on can turn any rash into Stevens-Johnson syndrome which can be fatal. And her heart rate still should not have been as high as it was even with being sick, so we are staying off the seroquel and monitoring it. If she stops sleeping or her brain starts racing again, we will try the seroquel again.
She seemed to be handling the medication change okay, although today was a rough day again. I guess if I am honest, saying it was rough would be putting it mildly. I came as close today to calling 911 as I have ever come. It all started over an innocent sandwich (which we did not have, but she wanted!), and ended 2 hours later with our living room completely rearranged by a raging 11 year old, and her actually going into the kitchen and searching the drawers for a knife to kill herself. I am bruised and battered both physically and emotionally. I don't know if it is all the excitement of the past week, anxiety over going back to school on Monday, or if the medication has completely cleared her system and she is starting to cycle again? The next few days should give us a better idea... but maybe not?
Tonight I am reminded again that our lives are not in our own hands, but in the Hands of One who loves us unconditionally. And I am thankful for His plans and purposes in our lives, even when we don't understand them. I am praying for peace and stability, but resting in the knowledge that He knows best.