Friday, July 30, 2010

One week update...

So Jaymes has been gone for a week now. Longest I've ever been away from him. Of course, I'm still there with him at least 3 hours a day but it's just weird not having him here. The house feels very empty.

His bedroom is all done. We painted three walls yellow, and one wall with the black chalkboard paint, so he will have an enormous chalk board to keep himself busy at night rather than destroying things. I painted little dinosaurs on the walls, and his name on his closet door- it looks a lot better than it did!

He was set to go home today, but things changed a bit so obviously that did not happen. He's doing well physically, now that he is on the lactose free diet, he is feeling a lot better. Without going into gross detail, his diapers require a lot less clean up. Thank god. They said he didn't really eat much today, but they gave him beefaroni, and he hates that so I don't blame him for not eating. Told them to keep PB&J sandwiches handy if he won't eat. He'll always eat that.

I came this morning for the visiting hours, and Jaymes was very hyperactive, and not that happy or capable of focusing. It was a short visit. Had the family meeting after that, where the social worker and I discussed his coming home today as he was supposed to be. I told her that based on how he was acting today, I was not sure it was a good idea. She said a doctor would be calling me, or meet me at the unit at evening visiting hours to discuss that.

Turns out either I or the doc had a miscommunication about medication. They thought I wanted him off the Risperdal and on something else. I thought he meant he was adding Tenex to the regular dose of Risperdal. So, they took him off the Risperdal, and started him on Tenex. Hence the weird behavior. So while visiting this evening, a nurse suddenly says she has discharge paperwork for me, and I was less than excited.

Prior to the nurse finding me, I'd been visiting with Jaymes, who was even more hyperactive, and not very pleasant. He was on the verge of losing it the entire time. When I was giving him his bath, he was kicking, throwing water and wet washcloths, and scratching. Got worse while getting him diapered and dressed... He was throwing toys and screaming, and continually hitting the nurse call button. Once I got through with the confusion about discharge, and they'd gotten a doctor on the phone to pacify me, things were ok. He'll start back on Risperdal along with his Tenex at 8pm tonight, and will go home Monday assuming nothing absolutely insane happens. I felt terrible saying no, I'm not going to take him home today... But I need him to be stable on the meds he is going home with. By Monday, he will be, so that's good enough for me.

Monday also starts (hopefully) the personal assistance, which will be around 2-2.5 hours each day (mon-fri) of Jaymes aweszome respite care worker coming to help out with him or take him out. On top of that, we are also reauthorized for respite services. So things are falling into place.. But man am I tired. Too much driving, too little sleep, and one meal a day doesn't work well for me.

On a more positive note, Sierra is just about potty trained. She had one little accident because she didn't make it to the potty in time, but in general she's spent the last 2 days out of diapers. Very impressive. I guess she is also starting pre-school soon, but really until this Jaymes crisis is over with, I don't have the energy to even think about it right now. We're wearing down for this week! I think we may have a Duke appointment on Tuesday too- bleh. You'd think I'd be skinnier with all the running around!

Wednesday, July 28, 2010

Unexpected information... Hmm.

Just got home from visiting Jaymes, didn't go too well. He's off his meds right now, and wow is he hyper. I haven't seen such a manic Jaymes in a few years! He was literally vibrating with energy. He was fluctuating between happy manic and angry manic, and was just too worked up to even really notice me there most of the visit. Interesting to see him off his meds though, I suppose the meds were doing more than I realized.

Today I was given some very interesting news... The intern who was digging through all of Jaymes old records accidentally came across test results from 2008 that no one ever told me about, and we missed the follow up appt for some reason (I have no idea why, I never miss things like that!). Apparently, Jaymes is severely lactose intolerant. Nobody ever called with test results, so I assumed it was the usual "if you don't get a call, tests were normal" and just moved on to the next specialist. I feel terrible for Jaymes, between me and the doctors, this totally slipped through the cracks and he's been suffering for 2 years because of it. That explains the horrible stomach problems, and his lack of weight gain. Poor baby. Now that we know, he's on the lactose free diet. I imagine his mood will be a lot better once his tummy feels better. If nothing else comes of this week he's been there, it was worth it to find this out.

He should be discharged Friday night, assuming nothing changes. They're starting him on a higher dose of Risperdal and a new medicine (Tenex) to replace the Clonidine. Hopefully he'll be doing better! Now I'm off to go research lactose free diets. The hospital may have specialist to make it easy for them- but I need to arm myself with information!

Tuesday, July 27, 2010

Another totally insane day

I am TIRED! Got up at 8 this morning, thinking I had a 10:00 appointment. Wait for my mom to come get Sierra to keep for the day, then at 9:00am I glance at the calendar. Guess what? My appointment was 9:00, not 10:00. So I get on the phone, and thankfully someone cancelled for 2:00pm, so that was fixed. When my mom got Si-Si, I did some work on Jaymes room. We are redoing it, and making it both safer and more attractive. He had peeled all the paint off the wall on one side, and two walls I never finished painting. So the plan is that one wall will be painted with this neat chalkboard paint my mom found, so that he can draw with chalk instead of peeling paint. The other 3 walls will be pale yellow. We're going to clean his nasty carpet, and put up some cute dinosaur stickers or something like that. Will be taking everything but the bed and his bean bag chair out (there wasn't much anyway) so he cannot climb to unscrew the lightbulb in the ceiling fan. I'm also going to chuck all the garbage in the closet (old sheets, broken toys) out, and fix the shelves to hold his clothes like it should be. Bought a combination lock to put on the door so he won't be able to open it and break the shelves all over again. Also am replacing all the electrical outlet plates with blank plates, so that there will just be no electric outlets to stick things in. It'll be clean, safe, and pleasant. It's a project I needed to get working on anyway.

Ok, back on topic. Did some work in the bedroom, then headed to the hospital. I went to the "Service Excellence" folks, who help mediate issues between patients and staff, and explained about the diaper rash and especially the concern that my wishes weren't being respected like they should have been. Amazing how fast that worked. The heads of the nursing dept met with me, and were wonderful. The issue has been solved, and the rash looks a LOT better. He is back in diapers only, no pull ups. He is being checked every 30 minutes, and it's being recorded on a chart. He is getting diaper rash cream every change. I am happy. Jaymes is happy.

I also met with the social worker, who I was able to explain my concerns and opinions regarding treatment with. She got me into contact with the Resident doctor, rather than one of the darn interns. He listened to me, and freaked me out a bit by saying Jaymes would probably be ready to go home tomorrow. I told him this concerned me, and that what I wanted to see happen, if possible, was for the meds to be stopped and given a day or two to get out of his system, then loading up whatever the next med idea might be, and observing that too. At that point, he suggested Jaymes take a 4 Hour Pass, to see how he will be at home. I was good with this, but had to rush out to my appointment first. Dropped one of Jaymes hearing aids at Comp Rehab to get fixed, picked up the one that was fixed, then ran to my appointment. Got a little lost, and called and again they were soooo understanding. Finally got there, the new psychiatrist is fantastic. I really liked her. She listened to me rant a bit about the Jaymes situation, then agreed that upping my anti-depressant dosage would be a good plan. She also said to keep taking the anxiety pills, because "anybody would be freaking out with al the stuff you've got happening!"

I agree!

So, run from there back to Comp Rehab, pick up the hearing aid. Head off to my friend's house, where I am petsitting. Took care of those animals, and came back to the hospital to get Jaymes for his pass. The doctor came in before we left, so we talked awhile. He said that he would agree with what I wanted- take him off the meds, let him detox, then we'll start him back on Risperdal, and try Tenex instead of the Clonidine. I'm guessing he'll go home Friday evening, assuming he is still doing ok. This makes me feel a lot better, and gives me some time to finish his bedroom, figure out the car safety issue, and get the in home personal assistance care set up. That will help a lot, it's 144 hours per three months, so around 2 1/2 hours five days a week. That will lighten my load tremendously. I am really hoping that with everything in the works, we are setting my little buddy up for success, rather than just hoping it'll change on it's own.

I took Jaymes home to wait for hubby and Sierra to get home. Jaymes and I fed gummy worms to the pony, who appreciated it. When everyone was home, we got in the car and went to McDonalds. Jaymes was happy, but he was really kind of sleepy and not all there, and kept asking to go back to the hospital. He did enjoy himself though. I enjoyed eating, I was starving. Had not eaten anything all day, so chicken nuggets never tasted so good.

Took him back later, gave him a bath and did his lotion, then gave him back to the nurses for the night. He was happy to be back, and wanted to go hang out with the teenagers. The little guy his age went home this evening, before Jaymes left on his pass he gave the other kid a hug and said "bye friend!" Now it's just him, and 4-5 teens. Seems like the teens are very tolerant though, and they seemed to like Jaymes. Jaymes loves everyone, so that works out.

Went home, but had to go back to Walmart for paint for Jaymes room. Got that, hopefully it's the right color or close. And now I am flopped on the couch with a fluffy black dog and my laptop and I am absolutely exhausted.

Things are improving, but I am drained. Just trying to maintain the little bit of sanity I had to begin with. I may go nuts, but my kid won't!

When something starts getting better, something else happens and it all goes to hell again!

Jaymes has been at the hospital for 3 days thus far, and as far as structure and mental health go, he's being looked after very well. Unfortunately, medically, he is not. Not at all.

The day Jaymes was admitted, he did not have a diaper rash. None whatsoever. I'd changed wet diapers probably 8-9 times during the 9 hours we were at the ER. Lots of wet diapers, but no rash because it was being kept at bay by frequent changing and wet wipes.

The next day, upon visiting Jaymes at the morning visiting hours (12:30), Jaymes had an overflowingly wet diaper. So, I changed him. Then he pooped, and I changed him again. I noticed his rear end was starting to look a little pink, and mentioned it to the staff. Next visiting hours, same day but in the evening, I got there and Jaymes had a dirty diaper once again. Changed him, all was good.

The nurses have this belief that he is potty trained, despite my telling them that he is not. They want to try and get him to go in the potty, but really, this is not the appropriate time for potty training. The child is there for psychological help- not potty training. And while I realize that he is the only child (and that they rarely get kids who are not trained) on the unit wearing diapers, that was not a secret. I disclosed that bit of info to everybody we came into contact with, from the ER to the 10th floor. Even if he was potty trained, the toilet in his room is adult sized! They don't have a little potty seat like we have at home, to make it small enough for him, and they won't allow me to bring one in. When they put him on that toilet, he has to sit sideways and hang onto the seat with both hands or he will fall in. Literally. Not appropriate.

Anyway, the next day once again I'm greeted by diaper that is full of urine. Every time I've visited, twice a day in three days, he has had an overflowing diaper. Worse yet, they decided he should wear Pull Ups instead of diapers. which would be fine if they had been changed enough to prevent a rash. But Pull Ups do not absorb like diapers do, they're supposed to be made like that so that kids who are in training will realize it is uncomfortable to wear a wet Pull Up.

Night before last, I told the nurses he needed diaper cream, he was getting a bit red and sore now. They said no he didn't, not to worry about it. I told them yes, he did and you need to order it. The night nurse said just bring it with me in the morning. So I did.

Morning nurse takes it, then says no they will not use it. Instead, we'll use Aquaphor. Which is a great lotion, but it is not a great diaper rash cream for Jaymes. I got upset, and argued with the nurse for awhile, but could not make any headway. Got home, and called their equivalent of a patient advocate. Got a call immediately from a doc, who told me that the orders for cream would go in immediately. Good.

Went to visit yesterday evening, and the cream was there and had been applied once. Great. Only problem was, they waited too goddamn long. If they had listened and allowed me to put diaper cream on him the day before, it would have been ok. Not anymore.

His rear end is dark, dark red and bleeding. It's a huge area over his entire diaper area. It looks like several layers of skin have been burned off. He screams hysterically if you go near it to clean it or apply more cream. He has to be rinsed off in the tub if he has a bowel movement, and even that is agonizing for him. And when he goes pee while playing, it's very obvious, because he starts crying and screams "need to go to hospital! Jaymes butt! Jaymes butt."

In what world is this ok? In what hospital is this acceptable? He had no rash when they got him, and he is in PAIN because they did not listen to me and change him enough. And again they ignored me when I said he needs diaper cream,

I'm headed up there shortly, and will be demanding to speak to a social worker about this. This is a Big Fucking Deal, and I am VERY upset. That rash was bad enough last night that it may need some actual medical attention, and something for the pain. Not ok. How does this happen on a PEDIATRIC HOSPITAL UNIT?!

Anyway, unless I see them write into his chart "keep in diapers, check every thirty minutes, use diaper cream every time" and something about pain relief, I'm taking him home.

Sunday, July 25, 2010

More updating, sorry for the lack of a catchy title

I visited Jaymes twice today... I like that I can visit twice a day, even if only for 2 hours. The weekdays will suck, I can only see him an hour in the afternoon, but 2 hours in the evening. The nurses said that they haven't really been able to get him to eat, so they gave me his pizza and I sat in the middle of his playing with Thomas trains and fed it to him one tiny piece at a time. A trick that I learned from the OT back when Jaymes wasn't a little stomach with legs. At least I got something into him. I also brought them a box of Lucky Charms to use as incentive to finish meals/do tasks he doesn't like/as a reward. If they tell him "dinner first, then Lucky Charms," I know he will eat.

I played trains with him for an hour and a half, then we went back to his room and I gave him his bath. Apparently I am too stupid to work the shower/tub at the hospital. I guess they made it so you can't really take a bath (there's no button to make the drain stop draining) so that suicidal teens can't drown themselves... However there was also no little button to pull up so the shower sprays instead of the faucet. So, rather than look clueless I just sat him in the tub an splashed handfuls of water over him. Ghetto style bath, but he ended up clean, so whatever works. He asked me a couple times "mommy sleep in bed Jaymes bedroom." I had to remind him that I can't sleep there with him (I wish I could, I would stay there with him all the time if it was allowed) but that I'd be back tomorrow. He seemed ok with that. I think me leaving him is a lot harder on me than it is on me. I miss him so much. While it's nice to have some quiet at home, and be able to relax a little more, I'd rather have him home. You never realize just how much of life revolves around someone else until they're gone.

My friends keep telling me to take advantage of this to get some relaxation an maybe go have some fun I otherwise might not be able to, but I don't really feel like doing anything. Being at home just makes me sad, and I don't feel like riding. I just want the next visiting time to come so I can go back and sit there while my little buddy plays trains and ignores me for the most part.

I guess the good thing about this is that I am realizing that while Jaymes is a handful, I really don't like life without him. I know that he is where he needs to be right now, and that it's important for him to get some help so he can come home and be safer... I just miss him so much.

Anyway, I'm not really sure what tomorrow will bring. I know that the nurses said Tuesdays and Thursdays are days I can meet with the treatment team... So I guess I won't get any answers until that. The nurses tell me that the little kids usually spend 2 weeks there. Hard to swallow, but I knew deep down that the 72 hour hold thing was just a formality. I knew that they couldn't do anything for him in that short of a time frame.

So the point of this was to say that Jaymes is doing ok. He seems very detached, but ok. I know he's in good hands, although if I keep finding him with wet/dirty diapers each time I visit then I'm going to have to talk to the nurses.

Saturday, July 24, 2010


Yesterday Jaymes got really upset, and that meltdown escalated into a totally out of control meltdown, so on the advice of the psychiatrist, I took him to the ER. We sat there for nine hours before they decided to admit him to the psych floor for a "voluntary 72 hour hold." Beyond that, it's up in the air how long he will be there. They said the average stay is 7 days, depending on behavior, meds, and how many kids are there. So I guess we'll know when they know.

They have visiting hours twice a day for 2 hours on weekend and an hour on weekdays, so we've been up there a lot to check on him. He seems really calm and happy there. I think he thrives on structure, more structure than our household is capable of. It helps that it's a totally safe, inescapable environment too I guess. He's only gotten upset about diaper changes, but ho knows how he'll be once he gets used to the place.

Monday the doctors will be there and we can get a little more info on what they plan to do as far as meds go. Apparently weekdays are more structured than weekends, and he'll be expected to at least sit and color through group therapy sessions with the other little kids there. Should be interesting to hear about.

I really miss him a lot, although it is definitely quieter at home. We're going to take this time without him to get his bedroom and car safety situations figured out, so everything will be safer when he comes home.

Anyway, that's the update, all I know for now.

Thursday, July 22, 2010

Might be time to admit defeat

Ok, so awhile ago I wrote a blog post about the eternal question: if there was a magical pill of awesomeness that cured autism, would I utilize it? My answer has always been a resounding no. And in most ways, it still is. I wouldn't want to change who my son is, or take away his little quirks like singing "chicken and a neetch" and squealing with happiness like a piglet at an all you can eat buffet. I would not want to change the way he an find joy in the silliest, most random things... For example a blue cup that he fell in love with. I wouldn't want to change the sweet way he chirps goodnight as he's going to bed with daddy.

But I'm coming to realize that there are some things I wish we could get rid of. And while I feel terribly guilty for admitting to this (and really, in any situation you have to take the bad with the good, nothing's going to be perfect) I can't really deny it.

I wish he would stop throwing poop around his room. I wish he'd stop hurting me and his sister. I wish he wouldn't hurt himself. I wish he didn't peel the paint off his walls and tear the carpet tacks out of the floor, ruining the carpet in his room. I wish he didn't shred his curtains and blinds. I wish i could leave toys and furniture in his room without him using them to do dangerous things like unscrewing his lightbulb from the ceiling fan. I wish he didn't run rampant at other people's home, ripping off his shoes and throwing them while bolting to whatever is most breakable. I wish that he hadn't ripped all the upholstery on the ceiling and inside door panel of the back seat of my car. I wish he didn't throw stuff out the windows. I wish he didn't humiliate us all in public frequently. I could go on and on, but I won't. It's horrible of me to say this stuff, but it is what it is.

We had a couple good days, then the old stuff started right back up. His being in summer school for half the day helps a little bit. They adore him, they tell me how smart he is, that he needs to be mainstreamed, that he uses the potty. I love how he is at school. He is so sweet, so mellow, and so compliant.

I'm far to lazy to do a thorough rundown of the latest meltdowns, so I'll just share the main ones.

I thought Jaymes had settled back down out of the UGH stuff. Apparently not. Yesterday, I got him off the bus and he was all hugs and smiles and yelling BYEEE to the bus driver... Take the kids straight to the playground, thinking he'll be better out of the house and maybe I'll tire him out a bit. Get to the park, lock the car and walk like 500 ft away, and realize I forgot to put in his hearing aid (one is sent off for repairs, so he only has the one). Tell kids, and Sierra skips back to the car with me. Jaymes refuses, and stands behind a tree, glaring at me. Ignore that, thinking I don't want to overreact and make him blow up, so I let him stay where he was (I could see him, and he wasn't running off). Got the hearing aid, get back to Jaymes, put in the hearing aid.

Got to the playground finally, and Sierra went on the swings while Jaymes played on the slides and big equipment. Everything goes good for about 15 minutes, then Jaymes comes over and I smell a diaper that needs changing. Tell him "new diaper, then you can play again" and try to get him to walk back to the car, where the diaper bag is. He blows up. Then, as we're walking (me pulling him along), he rips his diaper off and yanks it down one leg of his shorts. The contents of diaper go everywhere- on him, on me, his legs, etc. I grab the diaper, and drag him along a few feet, then he yanks his pants down and gives the entire playground a lovely view of his poo covered diaper area. Pull his pants back up and avoid the urge to leave him there to become the Feral Boy of Kernersville... Had to drag him, screaming, all the way to the car. Finally found a trash can and threw the diaper, and got him in the car. As I'm getting baby wipes to clean him and me off, he throws the wipes out of the car. Then he throws both shoes. Then he sits with his poop covered butt on the seat of the car.

Finally hold him down long enough to de-poop him as much as possible and grab shoes, buckle kids into their car seats. Originally the plan had been to stop at the gas station for "special drinks" and both kids had been really excited about that. Jaymes immediately started screaming about his drink, and I told him "no, you made bad choices. You hit mommy and took off your diaper," and handed him his water. He flips out, and slaps Sierra across the legs, then scratches her (no marks, thankfully). She's crying and hysterical, I'm in the middle lane of a busy road with nowhere to pull over. Bellowing at Jaymes to stop. He does. Sort of. Finally manage to pull over, and put everything that was in the front passenger seat into the back seat, and move Jaymes' booster to the front. Put him there, where he can't touch Sierra. Sierra is very sad wanting the drink she was promised (and that she deserved, for being such a good girl), so I went through the Sonic drivethru and got her an orange slushie and myself a blue one. Did not get Jaymes one, and explained why to him. I know he understood. Fended off hitting and scratching while at the drivethru. Drove the 5 minutes home with no major mishaps, other than him throwing on the emergency brake once and putting the car in neutral once. As soon as I knew he was going to do that, it was easy to keep him from doing it, I'm pissed at myself for not anticipating that- normally it never would have gotten to the point of him doing it because I catch that stuff fast.

Today, I had to get Jaymes from school to go to therapy. Summer schools ends at noon, and is in Winston (about 15-20 mins from home), same as therapy. Except therapy is at 1:45. So, needed to waste some time rather than drive all the way home. I'm petsitting for a friend, so we went over there and took care of the dogs, let everyone out and played with them a bit. Jaymes wanted to pull their extension cord off of the deck, so I took the end away and stood on it so he couldn't do anything.

Of course that started a fit, which I ignored until he ran into the house and started throwing toys off the top of the staircase. Nothing broken, thank god. Cleaned up the mess and got Jaymes' shoes back on and dragged him out of the house screaming. Went to therapy, that went well. Went back to let the dogs out again and double check water and food, another fit about the house. Get him in the car, and drive home, he was really good until right before our exit on I-40. He yanked the gear shift thingy and put us in reverse, while I was going 65. Car jerked, every warning light on the dash lit up, so I coasted to the side of the road and cried like a baby (I know, pathetic. But really, when is god going to ease up on the whole challenges thing?!). Then I got my brain back, put the car in park, shut it off, and turned it back on. Started fine, went forward fine... We made it home obviously, but I'm thinking something is wrong with it now. As I slow down it feels more and more jerky... Hard to explain. Just not right. Not bad, but not right.

Any car gurus got any ideas? I always wondered what would happen if you it reverse at high speed. Thankfully none of us got killed. I am at a loss. I can't put him in the back with Sierra, you never know when he'll get upset and suddenly go after her. Can't keep him up front, because he's going to kill us, or kill the car. Or maybe both. I guess the next step is to put the baby/toddler convertible seat in there and strap him in as tight as I possibly can. But he knows how to undo buckles, so I'm not so sure I see that working either.

We have a psych appointment on Tuesday to discuss what Jaymes' options are. We lost our case manager at the worst possible time- we NEED one right now. I just got a call from some random person in some other state who got a fax with all Jaymes info (SSN, Medicaid number, medical history...etc. Lots of info.) in error from Custom Case Management. My number was on it, so the person called me. She is being wonderfully kind and mailing me the info. I think that it's the annual renewal thing we did not long ago for case management services and respite. Oh, had I mentioned we lost respite care? Yeah, what a great couple months. Our wonderful case manager leaves, the respite authorization expires and there's no one to renew it, Jaymes' OT discharges him (we had an assessment at another facility and looks like he'll start OT there in a couple weeks, thank god)...

Oh, now that I realized what a tangent I just went off on... Back to the appointment on Tuesday. I've already talked some to Dr. Klinepeter about options. He said that we'd look at meds, possibly a medication "holiday", an ambulatory EEG, and get the ball rolling on an inpatient program. The way he explained the inpatient thing is that it's a very long process, so better to start it now and have it available quicker if we do end up needing it. He said if Jaymes comes up on the list, we can just say no thanks if we don't need it anymore. I hope that will be the case.

I do not want to put Jaymes in any kind of facility. When I was a kid, I had that done to me, and it was the most terrifying, awful thing I'd ever experienced. It didn't do anything for me either, none of my issues stopped or improved at all- I got better at hiding it. Anyway, I never ever want him to feel so afraid and alone as I did. The thought of doing that to him makes me sick inside- to me it feels like the ultimate betrayal and the ultimate failure. I know that in some cases it is necessary... But I really, really, really don't want to do this. I just can't do that to my little buddy.

But he is destroying everything- the car, the house...etc. He is making Sierra miserable. She's afraid of him, and she hates having him come places with us- she says "Jaymes ruined it." He's making things miserable for us all. I'm used to it, it's ok for me... But Sierra deserves better. I just don't know what to do. So yeah, at the moment I'm very stressed out and unsure of what we should do. All our friends (both online and local) agree that it's not fair to Sierra, and they are shocked that he is still at home with the stuff they've heard/seen. I don't know who to "side" with. I wish Jaymes came with a user's manual.

Tuesday, July 13, 2010

Warning: Ranting ahead.

Not a good day today. Not at all. We had the Neurologist appointment at Duke today. I had really high hopes, I felt sure that Duke (a highly respected children's hospital) would take me seriously, and want to get to the bottom on Jaymes' issues. I thought this would finally be an end to going from doctor to doctor, begging for answers. Nope. So much for that.

Jaymes woke up in a mood. His pupils were doing their thing, and I knew the explosion was coming, only question was when. Apparently, the "when" was the minute we got out of the car in the parking garage. He immediately went into screaming-flailing mode for reasons unknown. He's not afraid of hospitals, he's been begging to go for days...

Anyway, he screamed all the way through the first elevator ride. He screamed as we did the underground tunnel that went from parking garage to hospital area. He screamed in the restroom. He screamed in elevator #2. He screamed in the waiting area. Even the parents of kids that were obviously autistic looked horrified. He screamed as they took him back, but briefly stopped when they did his vitals. Not sure why he liked that so much, but I was happy to have a moment of relative quiet.

It didn't last long. We got put in the same exam room as last week. The exam room with a big roll of that paper they pull over the exam tables. Also, the exam room with the not safety proofed electrical outlets that Jaymes loves to play with.

The screaming began again, and escalated as I had to pry him from the various dangerous or destructive activities he engaged in. He screamed through the first doctor (who I guess was an underling? Intern? New doctor? No clue.) talking to me for a good 30-45 minutes. We had to yell over him, and I had to pry his teeth off my arms (Jaymes, not the doctor) and block punches. I had brought my incredible concise, detailed account of the dates/times/durations of the pupil episodes, as well as a written record of his meds, his nosebleeds, and his recent ER stuff. Also, the MRI report and the CD with the actual MRI on it. Did they read it? Apparently not, as they continually asked me questions that were answered in those four pages. i wrote it down because I knew I would not be able to remember it- and i was right. I said several times "read the papers, please!"

Eventually, the underling doc left, and went to confer with the "real" doctor. During this time, Jaymes shredded some more paper, got in another few good punches, shoved Sierra across the room at me, and hit the nifty little red emergency button on the wall. In came the nurse, looking very concerned. I apologized and told her that Jaymes got a little button-happy. Kept him away from there after that. Very embarrassing.

Anyway, the doctor came back in and asked the same questions that he would have known, in detail, with better accuracy, had he bothered to read any of it. But ok, I guess he didn't realize how hard I worked on condensing a looooong history into four pages. Whatever. The end result of this appointment... Was not much at all. He said he didn't believe at all that it was a seizure issue. He also did not sound entirely convinced the pupil thing ever even happened, because his eyes were normal at the time. Yeah, they did their thing before the appointment, and again afterward. Way to cooperate, kiddo.

So, what was recommended? For the issue that they don't think is seizures? Anti seizure meds. Because (and I quote) "He's on so many meds already, what's one more?"

At my insistence that this was more than a simple behavioral thing, he offered up a 48 hour ambulatory EEG. So they'd get the gear on his head, and send him home for 48 hours. Ok, that's do-able. He's had the gear on for a few days before, and we'd be able to at least be home. That was the best I was getting out of him.

Went back out front to check out and get the appointment for the EEG. End of September. Great. I guess until then I should just sit on him, huh?

He screamed his head off and tried to bolt for the not-very-high-not-very-substantial glass railing of the very high 3rd floor. Not sure what his plan would have been, but all I needed was a kid jumping off the 3rd floor. Ran him down, caught him, hung onto him. Tried to ignore all the people gaping at us in horror. Got done there, and Jaymes had a smelly diaper. Dragged him into the bathroom, still struggling and shrieking. I put him up on the baby changing station (thankfully he's still small enough!) and attempted to get out a clean diaper, and some wipes. He grabbed the wipes pack and threw it into the bathroom door, then threw the diaper. I strapped him down with the seat belt thing on the changing station, and wrestled through a poorly executed diaper change. Everyone in the bathroom was suitably horrified.

Got him back to the car, drove home. I put him in his room in an effort to put him down for a nap, but he didn't nap. He just screamed and wound himself up even more. He took his little fabric/wire tunnel thing apart, and wrapped the wire around his ceiling fan and turned it on. Let him come out at 4:30, so I could start getting him ready to leave for therapy at 5. Unfortunately, he was still very angry, and while I was unwrapping the wire from the ceiling fan, he got eggs out and threw them (and stomped them) all over the house. So I ran around cleaning that, and then discovered he needed his diaper changed and tried to catch Jaymes to change him. He threw some more eggs, so I cleaned that and chased him around the house till I caught him, put him on the counter to change. He threw his shoes/pants/the wipes and the clean diaper, and while I was getting those back up, he bolted again. Caught him again, I was kicked and slapped but got him on the counter. Got the nasty diaper off, got a little wiping done, then he threw everything off again and rolled across the counter with his poopy bottom. Greaaat. Finally wrestled him down to wipe him, then he bolted outside without any pants or diaper on. Caught him in the driveway and carried him inside and put on a new diaper and his pants. Could not get his shoes on, so I put him in the car, strapped him in, ran in to clean the poop off the counter. Went back out, put his shoes on, threw the hearing aids in my pocket to wrestle onto him when we got there. Get to the highway, and get a shoe in the face. He threw it, it bounced off the windshield, and smacked me in the forehead. 2nd shoe hit the back of my head. Having lost his weapons, he decided to start stealing things from Sierra, who screamed her head off at him to give her back her little spray bottle. Finally I hollered at him to give it back, got hit in the face with that as it bounced off the windshield. He sat there and yelled awhile, but eventually stopped wreaking havoc. Then I start hearing ripping noises. He shredded all the grey fabric of the ceiling of the car I've owned for all of a month (it WAS quite nice). Now it's ugly yellow foam on the ceiling. He collected up a nice pile, then rolled his window down and threw them one by one at cars behind us. Lots of pissed off people honking their horns at me. Not like I can do anything about it though. He threw some toys out too I think, not sure what all went out the window. I was "this close" to taking him to the ER and making them admit him.

I got to the therapy parking lot, and had a panic attack. Got that under some control and went in to therapy, shaking like a drug addict. Therapist reminds me this is the last OT session, she's discharging Jaymes even though (in my opinion) he's WORSE now than he was several months ago. I love the woman, and I understand why, but I wish it didn't have to be this week. Those therapy sessions keep me grounded- I know they are constant, unchanging and they keep me semi organized. Now it's all fucked up.

Drove home in a horrendous storm, tornado warning, all that good stuff. My pony was miserable in the pasture, being drowned in rain. I gave him a ton of hay to keep him semi comfortable, poor boy. He gave me pony cuddles in the rain. I love that pony, he is so wonderful.

I'm still feeling sick and depressed, and shaky. Took some meds, feel a lot calmer now, so that's something. Going to try to go to bed early, hubby will put Jaymes on the bus tomorrow, so I have relative peace until 1:30. I'm not looking forward to him coming home tomorrow. I'm almost afraid to be at home with him because he's just so difficult. It's just getting worse and worse, but nobody feels it's really appropriate to hospitalize him because no matter how aggressive and out of control he gets, he's only 35 pounds. But, as the huge MRI nurse guy told me, "that kid is freaky strong."

So I'm playing the waiting game I guess. Left the psych a message, and when they call me tomorrow (and I hope they do!) I will try and get him in ASAP to figure out what to do with him. We can't go on this way- it's too much for all of us. And really, sierra deserves to be able to feel happy and safe in her own home. She hates his fits.

I hate the wait and see, but it seems like the only option for now.

Monday, July 12, 2010

Brain's not broken, but something seems to be.

Since my last post, nothing much has changed. We now know more officially that whatever is going on with Jaymes is a mystery, thanks to the (apparently pointless) MRI. The good news is that he doesn't have a brain tumor or any kind of damage beyond what was there two years ago. The bad news is that we know nothing at all.

Since Jaymes' MRI was at one in the afternoon, it meant no food after 7am and no anything after 11am. I thought I was being slick the night before, in filling up a baggie with a massive amount of cereal and leaving it right inside his door, hoping he'd fill up early so he wouldn't want breakfast... Bad plan. Not only did he destroy his room like normal (shredded mattress, all sheets off the bed, bed moved across the room, closet massacred...etc) but there was a lovely layer of Cheerio over every inch of his carpet. I opted to put the dogs in there for an hour or so and see if they'd vacuum up the mess- and they did! Good dogs.

The report says "Findings: No significant interval change from prior study in the appearance of the hippocampi. Subtle asymmetry in the architecture of the left superior hippocampus is again noted. System T2 and T1 hyperintensity in the mastoid air cells likely representing an infection/inflammatory process."

I have no idea what a lot of that means, but the first bunch means that his brain looks the same as last time, with no change in the last 2 years. Which is good. Now I can stop freaking out about progressive brain damage and brain tumors and aneurysms and all those horrible things... The down side is, Jaymes issue remains a mystery. I am not sure where we go next. The neuro at Duke will very likely tell me that based on the MRI, we need to just play the wait and see game again. I don't know where else to look for in an effort to diagnose this pupil size, nose bleeding, angry violent Jaymes issue.

So we got to the MRI lab, and I was thrilled to see only one person eating. He was only eating sunflower seeds, so there was no fear of Jaymes attacking him for his food. Unfortunately, the room was full of older folks who were not too thrilled with listening to Jaymes scream and bellow at me "I'M HUNGRY. JAYMES THIRSTY!" But whatever, nothing I could do to calm him down at that time, and we couldn't leave. I was relieved to see the nurse come out to take us into the back. She gave Jaymes the sleepy medicine, but rather than making him sleepy, it turned him into the toddler version of a belligerent drunk. They took him back, and sent me to the waiting room. An hour later, I was called back to help them wake him up, and get the rundown on what happened.

He ended up having several IV's started. The first three, he ripped out. Apparently the meds and his current personality turned on the rage button, and he was absolutely uncontrollable for them. I cannot say that surprises me. So anyway, the big male nurse told me how shocked he was at Jaymes strength. It took 2 male nurses to hold him down to finally get the last IV into him and get him fully knocked out. His little arms are covered in bandaids from the first mess of IV's. Anyway, once they were successful in knocking him out, all went as planned. He didn't really wake up for another 3 hours. During that time, we were taken in a wheelchair to another part of the hospital, via underground tunnel a LONG way, to pick up the report and the CD of the MRI. Got that, but sat there for more than 2 hours waiting for transport to take us back. Apparently they had trouble finding us for whatever reason. Jaymes was still heavily sedated, but he was just awake enough to THINK he could walk, when he could not. So, I couldn't carry him, he was fighting too hard. Finally got taken back though, and was happy to get home. We got to the hospital at 12:30 for the test. Got home at 7:30pm. Yikes.

Got home, and I realized that I was in a bad situation with Jaymes. He was very upset, but still too woozy to walk. He'd jerk away from me, stagger a few steps, and crash head first. His face is bruised up... I thought keeping him in the grass outside would be best till hubby got home, mostly because I was afraid of nose dives on the hardwood floors. He fell down twice, so hard I could hear the impact of his skull and the grass... Makes me shudder to think about that. I finally got him down on his back, then he started puking (sedation makes him puke usually), so I kind of rolled him onto his side and let him get it out of his system. Hubby got home and helped me get him under control after a few more times of the jerking out of my hands and slamming into the wall/ground/my legs. He screamed for about an hour before crawling into his room and slamming the door. He finally went to sleep, did not want anything to do with me or hubby.

Bad day for him. I've never felt so helpless though, watching him struggle out of my grip and slam himself into whatever was around him. I couldn't hold onto him, but I couldn't let go either. I was feeling like we'd be on the way to the ER again with a fractured skull. I'm so glad he went to sleep. That was really scary.

Nobody here had a good day, I guess. I went and rode Rocket a little bit, but it wasn't much fun and I gave up when I realized it was only making me more frustrated and angry. the pony doesn't deserve having to deal with me when I'm upset. So got off, fed him, and gave him some gummy worms. So I plopped myself on the couch feeling ill and exhausted and in a terrible mood.

But hey, at least he doesn't have a tumor, right?!

He did do better the next day, although there were still some nasty outbursts. I took some video for the docs, though the video shows it substantially less serious than it is (probably because I was filming and not trying to slow down his destruction of the house. Believe it or not, my house was spotless until Rampage Number One. Here, have some video. Yes, he's in his shirt and a diaper, the mayhem started early. He did eventually get dressed. And yes, the tupperware box upside the head did hurt!

Last night, we heard Jaymes crying in his room after bedtime, turns out he had another nosebleed. This one was a little one, at least... I let him hang with me in the living room just in case it wanted to start gushing. Poor little guy kept saying "want to go to hospital." I didn't really see any point to hauling him back to the ER, it was not gushing and there isn't a thing the ER docs could do anyway. He was adamant though, he wanted to go to the hospital. He was quite unimpressed with my lack of panic this time. Poor guy, it breaks my heart to see him begging to go to the hospital. I wish he could just tell me what's wrong.

Today was his first day of summer school. His teacher seems to be really nice, and I did let her know that if he has a small nosebleed, to call me asap, but if it's a gusher, to take him straight to the ER. He's the only kid I saw on his little "short bus" but is already popular with the bus driver and bus aide. And seriously, why is it he gets a bus aide for summer school in the ghetto school, but not during the year for the nice school? And also, I wish they gave out bullet proof vests to parents, so that I wouldn't have to worry about someone shooting me as I drive into that neighborhood. SCARY. I feel for the kids who have to go to this school all year long. Not a nice place.

I put together a basic summary of Jaymes' meds/issues/history for the Neuro at Duke tomorrow, as well as a calendar with times and places where his pupils did their unequal thing. Hopefully the doc can be bothered to read it, and hopefully he doesn't blow me off. We need to get poor Jaymes figured out. He could use prayers for a good neuro appointment tomorrow!

Friday, July 2, 2010

Another wild goose chase

Well, I left the house this morning expecting to take Jaymes to see the neurologist at Duke. The morning started out in the typical muddled chaos that is my house. Woke up excruciatingly early, stumbled to my laptop and attempted multiple times to type in my password. For some reason the number eight looked a lot like the number nine, so it took an excessive number of tries. Checked my email, got the address for Duke. Thought about writing down the address, but it was easy enough to remember so I decided getting a pen would just be an unnecessary waste of what little energy I had. Wandered out to the pasture in a daze, at one point wondering what the neighbors would think of me in my pajamas in a zombie-like state, hobbling barefoot through the grass. Fed the pony, who was actually laid out on the ground. He was quite surprised to see me so early, lately it's been after ten when I emerge with breakfast. I threw some hay and his grain at him and ran back in to get dressed and ready. Jaymes woke up easily, as always. Sierra needed some prodding. Got both kids dressed and ready, and myself halfway presentable. Kids are strapped into their car seats with large baggies of Lucky Charms and squirty bottles of water. Get in the car, turn the key, and realize that i don't know where my ID or my debit card are. There's only half a tank gas- not enough to get very far. Ran into the house, interrogated Jason about it (he was innocent, by the way), frantically tore through the entire house in search of the elusive cards. I had finally found both cards the day before, having misplaced them for nearly a week. Finally, I gave up, and took Jason's debit card. Hopped back into car, and realize that ID and debit cards are in the little storage drawer- right where I put them yesterday, along with parking garage money. I had put them there so I'd be all ready to go. So much for that plan. Finally got out, and rushed off to get gas then drive like crazy the entire way there. I still ended up being nearly an hour late.

Upon arriving in the general area of Duke hospital, my trusty GPS leads me out of said hospital area and into a wooded area that looked nothing at all like a hospital area. It was at this point it dawned on me that I had transposed numbers. Should have written down the address. Was is 2301? 3201? 2103? 2031? No clue. Turned off the GPS and went by the hospital signs alone. Turned into the enormous parking lot and got the worst spot in the entire place. Took a good five minutes of walking with two very sleepy children until I found the correct elevator. At this point in my journey, I found myself staring at the elevator buttons, wondering which one would magically transport me across the very scary road that separated the three of us from the Children's Hospital. On the advice of some stranger, I hit the TR button. I have no idea what TR stands for, but apparently it leads to this horrible little tunnel that runs under the road to the hospital.

It was a bright, white, neat looking hallway but WAY too hot and a little too confining for my comfort. Also, it was pretty much uphill the entire way. I imagine the exercise is good for me though. We got to the correct building, and I was informed that we were an hour late, to which I replied that I had originally been told 9:30, then the automated phone call told me 8:30. And of course lately I am incapable of getting anywhere on time... Luckily for me, they were very understanding. We had no wait at all to see the doctor, who listened to me and took things very seriously.

The only problem was, the pediatrician's office referred us to the wrong physician. They were supposed to have referred us to the neurologist. Instead, they referred us to the autism clinic. Now, while they do use the neurology department's exam rooms on certain days, they are certainly not neurology. They manage medications. Which I'm sure they're great at- but we have Dr. Klinepeter to manage Jaymes' meds, and he's second to none.

So, the doctor called up the neurologist and set us up an appointment for July 27th and sent us on our merry way. We left the exam room a shambles- the doctor let Jaymes play with the roll of paper they use to cover exam tables. Not a good idea. I cleaned up as much as I could, but little shreds were kind of everywhere.

Anyway, we went down to the first floor, where I tried to let the kids play in the main waiting area. Unfortunately, Jaymes wanted to play in a section he was not supposed to be. So I had to race to capture him, and drag him back out. Gave up, and went outside and sat both kids on a bench. Decided that July 27th was too long, based on the symptoms Jaymes is having. Called the neuro office, and begged and pleaded and came away with a 10:20 appointment on July 13. Still not ideal, but good!

Sierra wanted very badly to see the fish in the elevator (the elevator is one of the clear glass kind, and it actually comes through a huge fish tank- really cool), so we did that quickly, then came out and made the long trek back to our car. Upon arriving at the car, I noticed a horrific stench coming from Jaymes, and executed a clumsy and unpleasant driver's seat diaper change. That finished, I pulled out and drove the 2 hours back home.

When we got back home, I was dead tired, so I flopped on the couch like a wet noodle. Jason was home still, and he fed them lunch. I stayed flopped on the couch until I heard the sounds of destruction coming from Sierra's room. Dragged Jaymes out of her room and put both kids on the couches for naps. Neither kid actually took naps. Oh well.

A couple hours later, Jason got home from work again, and we headed to Winston for the ENT appointment. The doctor listened to the issues, and of course the first thing he had to say was "have you taken him to a neurologist?"

Well no. If only it were so easy.

Anyway, Jaymes' one ear is no longer infected, but the tube is gone and there is lots of fluid in there. The verdict: set number SIX of ear tubes. That should be sometime in September, unless there is a cancellation. They will also check his nose thoroughly while he is under, and if necessary cauterize some of the blood vessels in the nose to prevent future nose bleeds. He did not see anything today that indicated a physical issue causing the nose bleeds and agreed that it all sounded very neurological.

So... I am dead tired. I am so frustrated. I'm a little bit cranky. But we're getting somewhere. I have the autism clinic doc at duke on my side, as well as Dr. Klinepeter's office. We've got the brain MRI scheduled for Wednesday. The neuro appointment on the 13th.

My sanity is kind of hanging in the air right now. Too much happening all at once, and I'm so tired. My arms are all scratched and bruised from Jaymes biting and clawing at me with his nails. I would like to ask that nothing else be dumped on me for a couple weeks.

Oh, and did I mention that yesterday Jaymes OT told me she's discharging him on the 14th? Great. So, the search is on now, for a new OT who can actually take him at a semi convenient time within the next few weeks. Would have been great to have a bit more notice than this. To her credit, she did tell me we'd only do another six months. I just didn't think about it I guess. Would still have been nice to get a reminder a few weeks ago rather than a week or two before though.

I am going riding tomorrow with my friend Dianne. We will ride our horses, and joke, and laugh like lunatics and I will temporarily forget the shitstorm going on right now. And it will be excellent.