so sleepy so early

So Chase calmed down. He is in bed. No major blowouts. We survived another day. How can I be falling asleep already? Its not even 9pm....

Oh and the psychiatrist is going to raise the risperdal dosage if things don't improve tomorrow. Otherwise, we may be headed for hospitalization #2.

Instability

Today at school, Chase had to be restrained, taken to the support room and was hardly in his classroom. The teacher is really worried. When he came home, he was displaying self harm behaviors and bad self-talk. Now I'm worried. Right this minute, he's doing ok, playing outside with another kid. But things change instantly.

I left a message for his doc. I'm waiting to hear back. I don't know what the week holds in store us.

Chocolate?!?!

Chase is doing his homework in his favorite pajamas.

Chase had a great day at school and was exhausted when he came home. I spoke with his teacher who said that he did well, except he refused to do any desk work. I feel a lot more comfortable now that his first day back went fairly smooth. He did his homework without arguing or getting frusterated.

Now what could finish off a good day but a delivery of chocolate? Anyone?!?!

School

Well Chase is on the bus on his way to school. I was planning on driving him to school but after talking to his case worker through Kaiser, decided to let him ride the bus. The sooner things are back to normal, the better. And Chase really missed riding the bus and never really had a problem on the bus before. So I'm prayin...

thyroid

Nothing new to really post today. Chase is doing well. His blood tests came back today. All his levels were fine but his Thyroid hormone was waaaay to high. No clue what that means or how it will be fixed, but GEEZ! give this kid a break! Now that he's "stable" his thyroid is out of whack?

Good night.

looking up

As I read over my blog from last night, I breathe a deep sigh of relief. Today was exhasutingly (is that even a word) pleasant. It started with Chase's blood test, then his psychologist, and then home for lunch. We relaxed for a while before I went to my on therapist appointment.

Yes, I acknowledge that I am struggling with very real situations. Mixed with a little depression can create a lot to cry about while talking to someone with a degree in listening. She reminds me a lot of the one I had throughout high school. Typical hippie style clothing, sandal looking shoes while still managing to look professional. I left the office feeling better.

Then Chase and I went to the library. I got some random books to read while in bed. **an aside...I have this strange dream to own hundreds of books someday on a bookcase that nearly take up a wall.**

Things always get harder when I pick Aimee up from preschool. She idolizes him. She missed him. Now that he's home, she wants his attention constantly and she will do whatever it takes to get it. He handled it well today. I could see him start to get amped up, many of the same behaviors before last nights rage. I gave him his emergency Trazodone. After that things calmed down, he "helped" me wash my car, which means he got squirted with the hose to cool off while I did all the work.

Once again Chase and I read more of the Prince and the Pauper. We remembered the tooth for the tooth fairy. BUT all the cash I had was a $5 bill....guess he's gonna think the price of teeth went up. I will never do THAT again.

I go back to work tomorrow. If anyone reading this knows of anyone local that could watch my kids sometimes (including Chase) while I go to work please have them contact me. Thankfully for the next month, I only work weekends...when Jared is SUPPOSED to have the kids. Babysitters have been doing a lot of filling in for him...

Time for bed. One day at a time. Yesterday was bad. Today was good. Tomorrow I get an 8 hour "break" when I go to work with 12 teen criminals in juvenile hall. Then I come home and drive my kids to Castro Valley to stay with family they adore. Gotta get through tomorrow. One day at a time.

Drained

Today was a good day.

And then evening came. Chase got "set off" by everything. There was nothing I could say to stop him from being irritable. He (we) tried to use his new coping skills, but even they were short-lived. The head banging continued today but I couldn't tell if it was for attention or that he couldn't stop. Ususally I can differentiate betweeen the two.

Gotta love it when your 6 year old starts raging in front of company. thanks to the psych hospital, Chase has added some new words to his vocabulary. If I have to hear him call me a "bitch" one more time, I might go hide under a rock. Oh and the icing on the cake was when the neighbor came to see if I was ok because he could hear Chase.

I got hit once in the face tonight. Nothing huge, but still scary. I am not going off the deep end here. This could be a fluke, or maybe I gave him his lunch medicine a little too early or something. Maybe tomorrow will be better. Maybe tomorrow he will forget that he called me a "fucking bitch" and maybe tomorrow I will forget how much it hurt.

Please don't even say "he doesn't mean what he says when he's raging." Duh. I know that. Its like saying sometimes a person holding a gun doesnt MEAN to shoot another person. Either way, the other person has a gun shot wound.

After Chase had lost his voice from screaming and he was all tired out, my sweet little angel came back. He wanted to put his tooth under his pillow for the tooth fairy and he asked me to read his favorite book of the week, Prince and the Pauper (Disney version of course!) He said that he wishes he could be like the prince and trade lives with someone who isn't bipolar.

What a day

What a busy day we had! We had so much fun. The day was full of errands, Chuck E Cheese, Pottery Corral, art projects, and playing baseball in the front yard. What more could I ask for?!?!? Tomorrow begins the LONG list of doctor appointments....

Homecoming

Chase and I are in my bed right now relaxing before bedtime. We have had a very mixed day since he was released from the hospital.

Normal Stuff

1. Picked up Chase, swung by my job to turn in paperwork and had lunch at Jack in the Box. Go figure, after 2 months of hospital food, all Chase wanted was Jack in the Box! He ate soo much I thought he might throw up.
2. Went home and Chase got to see all the projects that I did around the house. He liked his room a lot.
3. Went to Michaels to pick out some new art supplies. Chase wanted to buy EVERYTHING in that store.
4. Went to Kaiser to pick up his prescriptions. Hard to believe the amount of meds that I picked up for my 6 year old today.
5. Chase got a haircut (finally!) then we went to get Aimee. Chase saw his daycare teacher, Ms. Ann. I convinced her to pull out Chase's tooth since I don't have the guts to do it. After a few tries, out it came! But would you believe that I lost it somewhere between the daycare and the house....bad mama award goes to Kristen... Thankfully, he seems to have forgotten about it. Worst case scenario, I'll use the first tooth that he lost.
6. We went to the park.
7. We came home, painted a mask and now we are in bed.

Strange Stuff

1. Chase was so tired all day. The med dosages are the same as they have been for days, so I can't imagine the tiredness was med related.
2. At the park, Chase hardly played on the fancy brand new play structure. Instead he chose to sit on the ground and play with dirt. Alone.
3. He was saying that he was happy, but just seemed sad to me.

Below are some pics from the park today. Taken from my phone, so pardon the crappy quality.

We will have to wait and see what tomorrow brings. I pray for sunshine and smiles.

He's home!

Chase is HOME! Gotta go! Busy!!

Tomorrow

Tomorrow. Tomorrow is THE day. Not today. But I can handle another 24 hours. So can Chase.

Tomorrow can't come fast enough!

Happy Thoughts

Well here I go........I have given in. Again. My heart is set on tomorrow. Isn't it Peter Pan that has to think happy thoughts in order to fly? Well I'm thinking happy thoughts. Here they go:

My two favorite men on the planet. This pic is about 3 years old.

Chase and his future wife, Brooklyn

Chase and Grandpa following animal tracks.

So by this time tomorrow, I will be posting a pic of another special day. Discharge from the hospital.

?!?!?!

Off the Depakote and Chase had a good day! I'm NOT being optimistic. I CANT! But it doesn't hurt to be hopeful right?!?!?!

Meeting...

it was awful. basically 10 out of the 10 people there agreed that chase needs residential treatment OR needs home and school wraparound services daily when he leaves the hospital.... (ie AB3632)

BUT Kaiser cannot provide any wraparound services and only 2 weeks of residential (which wouldnt help anything). All of the help has to come from the school district and that help is months away and in order for them to REALLY move on it, they need to see multiple hospitalizations.....

So Chase will be coming home pretty soon. Setting him up to fail, just to get the services he needs. They also said that we won't be able to expedite the process without a lawyer. I can't afford a lawyer.

I'm livid. I'm sad. I'm discouraged. I'm terrified.

its on

The big meeting is ON for tomorrow at 11:30 am. Of course I work all night tonight so I'm sure be looking like a wreck. oh well, at least we will be moving forward.

argh!

The big meeting that determines whether or not Chase will go to RTC is supposed to be tomorrow at 11:30am. I'm waiting for confirmation and so far I can't get any. Sure would be ncie to know if its happening tomorrow or not!

fishsticks, beds and sleepy meds

Chase had another ok day. No major incidents. I had a great visit with him tonight. He ate a TON of fishsticks for dinner, dipped in loads of ketchup of course! I think half of his dinner was on his face.

Then we went up to the unit, worked on his goal for the night and hung out in the dayroom coloring pictures. He made me a "halloween" picture because he can't wait for halloween to get here. We seemed to have a very "normal" 6yr old evening. Nights like this make me question everything. Does he really need RTC?

I keep reminding myself that Chase's needs are not minute by minute. Its not as if he can come home, hop back to the hospital on a bad day, come home for a good day etc. We have to look at the long term goals. We want Chase to come home and stay home. Until that is likely, we have to look at other options.

A good day for Chase is very different from other 6yr old boys. Its even different compared to other 6yr old bipolar boys.

I've had 3 docs tell me that Chase is very unusual and hard to treat. All I can say to that is "JUST WATCH WHAT MY LITTLE MAN WILL OVERCOME!" If anyone can get though this, its Chase.

On another note, I bought a bed today. I've never had a REAL grownup bed. Always just a mattress on a frame. Below is a pic of the one I got. It will be delivered on April 1.

Doc finally gave me some meds to help me get sleep. WooHoo! We shall see how long it takes for them to kick in (I just took one).....

sleep? whats that?

The more I think about Chase going to RTC (Residential Treatment Center), the more questions I have. I'm trying to make a list so I am prepared for THE meeting. My list will take HOURS to get through! Hopefully they have time to answer all of my questions.

Chase had an okay day, besides chucking a tennis racket at another kid. No rages. Just irritable. When I talked to him tonight, he was in a good mood. He really likes his new roommate. They watched the movie "Snow Buddies" tonight and he was lovin it. I think its the one about a dog in the snow or something. He also seems to be eating more than he was.

Lots of changes. I know people think I'm depressed, and maybe I am. But its definetly situational. Who wouldn't be a wreck in my situation?? Some days are better than others.

Ok i'm just starting to babble now...exhaustion is kicking in. Tomorrow I see my doc to give me sleeping meds. Thank goodness.

Good night to those of you able to sleep.

The more I think about Chase going to RTC (Residential) the better and the worse I feel about it.

Residential....

So it looks as if Chase will be going to a residential treatment center for a while. I am very torn on this.

Good

Chase won't be in a hospital (it is more like a home)

Chase will be back in an educational program so he won't fall so far behind

He will be with the same 12 kids everyday (no constant coming and going of kids like in the hosp.)

The program is centered around stabilization and not acute crisis.

Chase will be able to have fun while receiving the care he needs.

He will likely be able to have home passes etc

He will form attachments with the staff and the doctors that he is unable to at the hospital.

Bad

He won't be home.

Aimee and I will be lonely.

He is so young...

The program is in the Sunset District of San Francisco. Its called Edgewood. http://www.edgewood.org/whatwedo/residential-treatment.html
I have heard TONS of good things about the program.

We have a big meeting with all of Chase's doctors, therapists, social workers, case managers and educators coming up in the next few days. Please pray that God sends us in the right direction.

NAMI

Well the depakote will be disappearing from Chase's list of meds. He is still struggling and the doc worries if the depakote was increasing his aggitation. Guess we will find out.

I had a nice visit with him tonight. He ate his entire grilled cheese sandwich and then we hung out in his room with his new roommate. I spoke with his roommate's mother, who just happens to run support group out in the Tri Valley area for BP kids and families. http://www.nami-trivalley.org/

I am going to try to get involved.

Chase will not be home this week. Chase needs a haircut. Chase needs to see the dentist. Chase needs to see his "new" bedroom. Chase needs to come home.

hmmmm

Although Chase has had rough patches in the last few days, I see him improving overall. I really could see him coming home sometime this week. I brought scissors with me to the hospital and trimmed up his hair. He was starting to look REALLY shaggy. Not that he cares.....I mean this is the kid who would walk around all day with his peanut butter and jelly sandwich on his face.

I am feeling better about life in general lately. I realize that it may feel like my world is crashing down around me, but in reality, I am so lucky. My family is fantastic (my favorite word of the day!) and my friends have my back 100%.

In two days I find out the specifics on the layoffs in my department....yikes.

A little sunshine

I made it through last night. It was one of the roughest nights I can remember.


Chase had a great day today. Gotta love the ups and downs of bipolar. I am hoping that this will be THE week. He seems like he is generally in a stable mood. He is also much less irritable and can focus on what is being told to him.

I'm so proud to be his mommy.

This pic is from Halloween 2008. He's a pirate (if you can't tell!)

On another note, I just wanted to say that my mom is amazing. She knows that Saturday nights are hard for me. So today she dragged me to dinner and shopping. No wallowing in self pity tonight! Instead, I put together a fancy shelving unit for Aimee's room.

My Selfish Post

Right now my life consists of working, visiting Chase, entertaining Aimee and trying not to have an anxiety attack at every moment. I am more lonely than I ever thought possible. And yet as most of you have noticed, I have pulled away from the people who love me.

Jared has moved on, and that's great for him. Aimee is beginning to feel like I have abandoned her. My baby boy is so sick that I wonder if he will ever lead a normal life. I am facing the reality that although my daddy is here today, he could be gone in an instant. I worry that my job will leave me behind due to the economy.

I try to distract myself with house projects....such as painting nearly every room in my house. Sleep has become a struggle, but also a great coping mechanism. For the first time in my life, I watch endless amounts of TV, especially when the "sleep coping skill" has stopped working. That works, for a while.

But during those quiet times....which I try to avoid...I find myself questioning God. This is not to say I'm sitting here feeling sorry for myself. I recognize that I am lucky compared to so many others. But I do question. Everything. God, my mothering skills, my devotion to my family, my lack of capability to be a good wife, and even my career. Where exactly do I fit? What does God intend for me? Couldn't He just give me a hint that things will get better? Couldn't He?????

How much longer?

I keep asking how much longer? I refuse to let someone else raise my son. But I also want him to be healthy. Why can't I have it both ways right now? (Yes I know thats selfish....)

He seems to be doing ok, except the doc is worried because of his tiredness. She is backing off on the tenex to see if that will help, without causing too much of a setback in his mood (his mood is fine right now, he's just tired all the time.) Now doc is saying maybe NEXT week he could come home. This is a nightmare. When I visit Chase now, he seems to be at home in the hospital. Is my 6 year old becoming institutionalized? That thought makes me sick.

SSI Update....looks like I make too much to have Chase qualify for any financial support except while he is in the hospital. Go figure.

A step back

Chase raged tonight and was placed in the seclusion room. Its unrealistic to think that even once he's stable, he wont rage. But it does make me sad. I hope this doesnt change any discharge plans.

Thank you

New Info

The Social Worker spoke with Kaiser and they will be providing intense outpatient for Chase when he comes home, at least until we get AB3632. I have the phone interview with SSI tomorrow so hopefully Chase will qualify for that also. I believe once he gets SSI, he qualifies for either medi-cal or medicare (can't remember which one)

Exciting Stuff

Chase is doing so well that he may be coming home soon! I'm afraid to get too excited but its hard not to! I'm so happy that they seem to have found a med combo that is keeping him stable. We miss him so much.

The reality is that this is probably just the beginning of a long road for Chase, but I am thankful for each smile. Whether or not he will eventually end up in a residential setting is not something that I can deal with right now, nor do I have to. But I am determined to get all the services in place for him so that he has all the support that he needs.

I work my graveyard shift tonight....so off to sleep until I go pick up Aimee.

Thank you so much for all of your prayers. I would be lost without your support.

The News and more

The Good News

Chase is doing well! He is participating in the group counseling, individual therapy, and even the one hour of "school." The meds have him a bit sleepy, so the doc is lowering the Tenex a bit. It is possible that Chase could leave the intense psych hospital soon.

The Bad News

They will not release Chase until we have AB3632 in place or something similar. Everyone feels like Chase needs multiple support systems in place to come home safely. For example, access to the Mobile Response Team, WrapAround services, behavioralists and behavioral coaches. OR the possibility of bringing Chase to a less restrictive psychiatric facility where he will receive an actual education (as opposed to the 1 hour per day he gets in the hospital.)

AND the people from AB3632 are unable (and unwilling) to speed up the process, so we are looking to May at the earliest.

The Reason for Such Issues

The reason that we don't have AB 3632 in place already is a pathetic one. Chase's Social Worker at his school (we will call her Bob), is the one who would help with getting Chase on 3632. I have been asking since last summer if she can get Chase evaluated for services. Bob told me that not only would we not "qualify" but that it would be shut down almost immediately due to budget cuts. So I stopped pushing it. Once in the hospital, I asked Bob again and also for an IEP. Bob told me the same thing about AB3632 again, and that we didn't need to do an IEP because when he comes home, he will get the same as he did before, no less. Turns out, what Bob did was illegal and just plain wrong. The principal got involved and now we have the paperwork turned in but it can take a LONG time to process. Otherwise Chase would have had these services months ago.

Action Plan

Tomorrow morning I will be speaking with the hospital social worker regarding my new information regarding the time frame. I will also be calling the Kaiser Case Manager to beg her for services during the interim (bad spelling?). I would also love suggestions on how to deal with the situation with Bob.

What I want

Yesterday was another day of no seclusion and no restraints. I'm optimistic now. That's not to say he had a great day, still lots of whining, lability and hard time following directions. BUT its improvement! I pray that the improvements continue.

I just want Chase to get better. I want him to come home. I want him to play with Aimee in the backyard. I want him to wake me up at 5am. I want him to make a mess in the living room. I just want HIM.

Woohoo!

NO SECLUSION ROOM OR RESTRAINTS TODAY!!!!! YAY!!!!

Great visit! We played 3 games of "Guess Who." We had a ton of fun together.

Thanks for all of the prayers. Keep them comin!

Playing catch

Chase raged and raged for about an hour. He got restrained again. They gave him his PRN and he was able to calm down. Weird...

Less than an hour later, I showed up for my visit and saw my perfectly happy little guy. He gave me a huge hug and crawled up on my lap. I was telling him funny stories about when he was little. Like the time he covered himself in vasoline from head to toe, thinking it was sunscreen. And the time he swallowed a penny so I had to dig through his poop to make sure it "passed through."

We laughed until we cried. We held hands and prayed. We prayed so hard that Chase was crying. Then, as if things weren't falling apart around us, Chase and I played catch. And for the record, he has an amazing arm!

Progress or coincidence?

This morning Chase had two huge rages. Both involved the "quiet room."

However, I had the best visit with him that I've had so far. He ate his entire cheeseburger without arguing. Then we worked on his goal for the night. He wrote all five of them by himself (with a little help of course). Then we played catch with a nerf football in his room. He was smiling. He was laughing. He gave me hugs and kisses.

When I got home, Aimee and I called Chase to say goodnight. He was sweet, happy and silly. Dare I say progress?!?!?! Maybe I should go knock on wood.

So much for that...

Chase had a rage before lunch today that lasted about 45 minutes. He had to be restrained for 7 minutes before he was safe. Thats all the update I have for now.

Day 35

Our Trip to Boston in 2008. We had a great time together.

Chase had another rage this morning. However, that was the only one today, which is an improvement. He has lost 3lbs. He went from 62lbs a month ago to 59lbs today. We visited Chase this evening and had an enjoyable time. He had fun playing with Aimee. I left feeling confident that he WILL stabilize. Everyone keeps telling me to stay positive. Believe me when I say I'm trying.

Today Kristie suggested that I find someone to come to the hospital and pray with Chase. I was hesitant at first but I asked Chase if he would like that. He said "If God can see how bad I want to come home, maybe He will fix me." So that's my plan for tomorrow.

its 2am.

I can't sleep. I keep thinking about Chase and wishing I could be there with him every minute while he goes through such a rough time.

I had a rough moment in Target today. In the aisle next to me, I thought I heard Chase. I walked to that aisle to see some random little boy with his mom. His mom was annoyed with him. I wanted to smack her and tell her that she should be so thankful to be with her son. I walked away with a hole in my heart.

One step forward, two steps back

This is a very hard post for me to write. At the hospital today, I showed up in the middle of a rage. I could hear him raging from off the unit. He was already in the quiet room. They used a blanket wrap on him and I'm not sure what else. I was just so distraught.

I sat in the hallway (i couldn't go in) while I listened to my baby rage for nearly an hour. After he calmed down, I was able to go in and sit with him. He had lost his voice from yelling so much.

Other than that, he was my normal little man again. I could tell he was almost embarrassed by the rage. Medically speaking, they took his lithium and depakote levels, both of which were freakishly low considering the dosages he is on. Both dosages have been raised starting tonight. They will also be switching the seroquel for the risperdal since his body tolerated it better.

He has been there the longest out of all of the children on the unit. He is also the youngest. When I was leaving, the social worker spoke with me.

Once again, the dreaded word came up. RESIDENTAL. She said that we are a long way from even getting to that point because for the time being, he needs to stay in the acute psych facility until he is more stable. But she said it will be unlikely that they would recommend he come straight home.

On a good note, THANK GOODNESS FOR CALIFORNIA! The mental health parity act means that our insurance can NOT limit the number of days that chase is in the hospital based on his parity diagnosis. I'm not sure what the other qualifying diagnosises are, but his is Bipolar Mixed Severe with psychotic features.

This is a hard post to write.

Nothing good to say.

For an update....

In the last 2 days, Chase has raged 5 times. That is more than he was doing before he even went to the hospital. Obviously I'm freaking out. I see a lot of anger in Chase, even when he isn't raging.

Part of me wonders if he's just mad because he's still in the hospital, or if the med combo is just not right for him. I don't know what other options we have at this point.

The doctor is going to call me in the next hour or so. I pray that she has an answer. Please keep Chase in your prayers.

Couple pics

Can you see how goofy Chase is? He was about 2.5yrs in this pic.

Chase's 1st Grade Picture. HE chose the bright green background.

Gosh I miss my little guy. An hour a day isn't nearly enough for all the hugs I want to give him.

Questions...and more questions

Three times today, Chase had to be restrained. All I have left are questions.

• Why is my SIX year old unresponsive to SO many successful medications?




• What is the plan after insurance runs out for the hospitalization?




• Am I expected to take home an unstable child?




• Am I wrong for even considering not taking him home? Does that make me a bad mom?




• How can he seem to be getting WORSE in a hospital setting?




• How does a child with a serious mental illness seem to fall through the cracks?




• Will he need to repeat 1st grade?




• Will he ever have a life that can make him happy?




• Why can't I fix him?