Cheaper Than Therapy

Ho Ho Ho and All that Good Stuff

2009-12-04T05:28:00.011-07:00

Last year after I became ill, I decided that I wanted to take some time to work on some craft projects---Christmas Ornaments---that I'd been dying to do, but never made the time for. As many of you already know (from the fabulous projects I've seen on your pages), having a creative outlet is a great stress buster.

A month or so into it, a friend who is also a family caregiver came by. I showed her my projects, and she asked if she could join me. Her daughter, who has Down Syndrome, thought she might enjoy creating things, and then we were three.

Big Kid was talking in his therapy group (young adults with mental health issues) about our little band, and a couple of his compadres wanted to join. As one said, "Even Goths love Christmas!" Seeing these young men---tatted and pierced---sitting around my dining room table in a sea of ribbons and bows is a vision I'll never forget! ;-)

We hauled a bunch of our creations to a craft fair over the summer, and did very well. And an idea was born.

So I organized and funded a collaborative craft studio to help market the creations of adults who have disabilities and their family caregivers in an effort to help them become more financially independent. If they aren't mobile or prefer to work in their own homes, we pick up and deliver the supplies to them. Every step of the process is a collaborative effort---from ornament design, photography, our new website----and of course the crafting!

Before the doo-doo hit the fan with Big Kid's illness, we had already sold to a few gift shops around the country. Unfortunately, we lost 6 weeks because of our crisis, and I feel awful for our crafters.

But it's not too late! Please visit our website and see if there's a "must have" gift or ornament for your tree! They're wonderful---the pictures really don't do them justice!

Highland Roses Design; A Collaborative Craft Studio

ATM

Day 41

2009-12-03T11:22:00.001-07:00

Grrrr! I've been having some internet connection problems in the last couple of days. Sorry!

The kid is doing great. He's been zipping around the unit in his walker in an effort to get stronger. They removed his stomach tube on Tuesday, and he still has some residual pain from that, but he's not letting it keep him down.

Of course, the vicodin they gave him yesterday might have helped a bit. ;-)

A rep from the care hospital approached us and asked us if they could take a picture of Big Kid and do a write-up on him. Apparently the speed of his recovery is quite remarkable especially since "he had had such a slim chance of survival."

Wha??? Yes, we knew he was very very ill and near death, but that's the first we'd heard of the original odds.

So I did what I've been doing way too much of in the past several weeks. I burst into tears. Again. Is there ever going to be a day when that doesn't happen? I think I've cried more in the last 6 weeks than I have in the last 10 years combined.

Big Kid put his arms around me. "It's ok, Mom," he said. "I beat it. I beat it."

Yes he did.

We're hoping that he can come home in a couple of days. We have the home therapy and care in place. Little Guy is going to move into the loft for a few weeks and let Big Kid have his room, since it's on the main level and won't require stairs.

Can't wait.

Thanks so much for sticking with us during this horrible ordeal. Thank you for all your prayers and kind comments. I don't think I would have made it through this without all of the support.

Many Blessings,

ATM

Day 39

2009-12-01T05:43:00.004-07:00

gah! I guess I really gave a wrong impression about Kitty with my bout of annoyance with her. My apologies.

As a mom, I struggle with this relationship. But my son is 22 years old, and it's not my decision to make. If I want to keep a close relationship with him, I have to support some of his choices, and be there for him if it doesn't work out. When they started dating, I wrote about her here, if anyone wants a little background.

She never wanted Big Kid's friend to stay at her house. I don't blame her a bit. She works two jobs, and wants some peace and quiet when she gets home. Big Kid talked her into it, because he's fearful and lonely when she isn't around and he doesn't drive. The "friend" had been kicked out of his own home and had been living off the kindness of friends for awhile. He knew a good thing when he saw it.

He ate all their food, didn't clean up after himself, and contributed nothing to the household. He even brought a freaking dog there, because he "always wanted a dog, and his mom wouldn't let him have one". He helped himself to Kitty's things, and started expecting her to haul his happy butt around in her car. She refused, and then there would be these two-against-one episodes. Not a good situation.

About 2 weeks into Big Kid's illness, when it became clear that it could be weeks or months before he could come back, Kitty told the "friend" it was time to move on. He wasn't her child, her sibling, or her significant other, and it wasn't her lot in life to support him. She didn't realize when he cleared out that he took some of Big Kid's stuff with him.

I'm not mad at Kitty because Big Kid's stuff was stolen. Those are only things and things can be replaced. I was just really annoyed at her timing, knowing that a large part of Big Kid's successful recovery will depend on his state of mind. He's my baby, and it's my job to be concerned about these things.

Big Kid doesn't want to go to the rehabilitation center, so the plan is that he's going to come home to our house for awhile. Our family doctor is going to take over his treatment, and his office is now an hour in the opposite direction. I can't and won't drive 6 hours in a day to pick Big Kid up from Kitty's house and get him back to see the doctor, especially if we have to do this a couple of times a week.

Plus, Kitty still has to work two jobs, and it wouldn't be a good idea to leave the kid alone for extended periods. At our house, he'll have somebody available around the clock, plus he'll be getting home health care and in-home therapy (and someone to help make sure he follows through with it). Kitty's more than welcome to come and stay over if she wants.

Yesterday they took out the pic line and removed the bandages from the Kid's throat. Early this morning, they're going to take out the stomach tube. Thank heavens. They had it capped off and just hanging for a few days, and it was causing him pain. I finally asked them to tape it to his body so it wouldn't move around.

He's been working with ankle weights and was able to walk to the therapy room (about 4 doors down) by himself. His legs are gaining strength, but his balance is off. They've been trying to wean him off the oxygen, but he only lasts an hour or so before his saturation level goes under 80. He still can't write. His hands are shaking all of the time.

But all in all, progress!

Thanks so much for your continued kind wishes and support.

xo

Day 38

2009-11-30T04:53:00.001-07:00

Big Kid had a fall yesterday when he was trying to get to his chair. He landed on his knees, but they're ok. He figured he had some bad knee karma coming for laughing so hard when I fell on my face. ;-)

As a result, the staff are insisting that he hit the call button before he tries to get up, so someone will be there to watch him fall (as opposed to throwing themselves under him to keep him from cracking his noggin). I'm just kidding.

The only problem with that is that sometimes it takes them 20 minutes to respond, and if he has to go to the bathroom, it might be too late.

Littlebit, thank you so much for the kind words and advice. I'm absolutely going to find out if there are things Big Kid can do other than leg lifts and extentions in bed, and hand weights, etc.

I think I'm a little worried about the wasted time. Big Kid is apathetic by nature, and gives up easily when frustrated. Right now he is calm and motivated to get moving, in a week he may not be. If he loses his motivation, it's going to take the healing process a lot longer. Those of you who've read my blog for a long time will probably get where I'm going with this.

Bi-polar disorder is ugly that way. Meds aren't the perfect fix-it-all, and when Big Kid gets a case of the uglies, it can get really, really ugly.

Last night he called me in tears. "I just want to die," he wept. Turns out his friend, who had been staying at Kitty's house, stole a bunch of his video games and took off. This is not the first time a "friend" has stolen from him, mostly because Big Kid isn't a real good judge of character and chooses dirtbags to hang out with. But the betrayal stung because he tries to have faith in the innate goodness of people.

After I got him calmed down, I called Kitty to find out what in the world possessed her to tell him something like that right now, when she knows how fragile he is emotionally and physically. "Well, he had to find out sometime", was all she said. Yeah, but now? Right now? It happened a couple of weeks ago, not last night. She couldn't wait a couple more weeks to tell him? She hung up on me.

I never raised my voice. I wasn't nasty either. So lovely. Today we get to sort out a 47-year-old-going-on-16-year-old's passive aggressive BS. I've got half a mind to break my bunny-slippered foot up her butt.

Called the night nurse and explained the situation. Asked her if she'd check on him a little more often and try to assess his emotional condition and to call if she thought we should drive down into the city to spend the night with him.

Today, hopefully Big Kid will get the stomach tube out and the pic line. Positive steps! We want him home for Christmas!

xo

Day 36

2009-11-28T22:26:00.002-07:00

I'm bone tired. I know I keep saying this, but really I am. I'm sorry I didn't post an update this morning, but my a$$ is dragging all over the place.

I spent the morning yesterday with Big Kid, and came home and fell into bed. I can't stop waking up at 2:30 or 3:00am, like I was doing when he was in the ICU. I try to go back to sleep, but it's hopeless. By 1 in the afternoon, I'm practically comatose.

When I woke up yesterday from my nap, Hubby and the guys had the tree up. It's always been our tradition to put the tree up the day after Thanksgiving, and then set a time over the weekend where we get together (moans from the teenagers and all) to decorate it.

When I woke up today from my nap, the boys had decorated it with all the care they could just to please me. I know they need the normalcy, but this was the first Christmas where I wasn't directing, and the first where Big Kid wasn't there complaining about the whole thing. gah. On one hand, I'm so touched that they took it in hand, on the other, I hate that the Big Kid isn't a part of it.

He's going to hate it too.

I know, I know, I'm being a big freaking crybaby.

I just want our life back, with everybody intact.

The good news is that the Kid is able to make about 4-6 steps on his own. Yesterday the physical therapist and he made two laps back and forth in the hallway with a walker. He said his "lungs were tired" and he had to go back to bed.

Today, when I got there early, he was seated in his chair and very proud that he had gotten there on his own. He was going to refuse a shower, but I talked him into one.

He didn't want to ride the wheelchair to the big therapy shower, so we got an extension on his oxygen hose, got a chair, and I helped scrub him down in the shower that was in the bathroom in his room.

The RT came in to look at his trach wound. He still has a big hole in his throat.

Then we settled down---all clean and shiny---and watched some of the "Dirty Jobs" marathon. ;-)

This afternoon, they took him off oxygen completely. He was really psyched, but he only lasted about 1 1/2 hours before his oxygen level went down to 75. It's just going to take some time.

He's trying hard. What I don't get is that there are no physical or occupational therapists to work with him on the weekends. Seriously, they just expect him to lie in bed and do whatever over the weekends and holidays.

This is advertised as a "care hospital". Healing doesn't take weekends off. Why don't they have people there 7 days a week to do this stuff? Big Kid was restless, so I got permission and went and got hand weights from the "gym".

::sigh::

xoxo

ATM

Day 35

2009-11-27T04:25:00.002-07:00

We had a restful and uneventful Thanksgiving. How about you?

Hubby, the guys and I ate turkey dinner early, and then they drove up to Denver for the football game. I brought Big Kid and Kitty dinner with all the fixin's at the care center.

The kid ate about half of his and conked out. ;-)

The stomach tube and pic line are coming out today or tomorrow. Joy!

The goal today (for me) is to get the boy into some underpants. Those gowns are way too short. Hubby has started referring to the kid as Fred Sanford, because he's still flashing all his junk around.

Some random thoughts from the past month:

I don't recommend the "Scared the sh*t outta me diet". I lost 10 pounds the first two weeks the Kid was sick, because everything tasted like ashes when I remembered to eat. Even worse is the "if you were any closer to death, you'd be dead diet". Big Kid has lost 40 pounds. He'd gained about 100 pounds as a side effect to depakote over the past few years, so he definitely had it to lose, but sheesh! What a way to lose it!

I'm never, ever going to be able to watch House, MD. again and give a little snicker when House treats the families of ill loved-ones facing death like chew toys. We had a taste of that. Not that this particular doctor had the malicious or perverse intent of being a total asshat, but his social skills lacked a certain something. So, as Hubby articulated---he wasn't quite a House, but more like a Bungalow. Although he was a brilliant doctor who helped save our boy's life, forever to us, he will be "Bungalow, M.D."

On Day 2 at the ICU, Hubby and I went into the family waiting room to unwind for a little while. I threw myself onto a loveseat, and Hubby sank into an armchair to the left of me. We were the only people in the room. A couple of minutes later the rocking chair to the right of me started rocking by itself. I was already at Defcon 1 on the terror scale, so it barely even registered. A little while later I asked Hubby if he had seen it, or if I was losing my mind. "I didn't want to say anything," he admitted. "You were already coming apart." We still have no idea WHAT in the heck that was.

People are kind. Many are virtual strangers and virtual friends (and virtual strangers who've become virtual friends). Being able to throw out my worst fears to the ether and ask for help and comfort in a world which is in the midst of chaos, and then have people extend to me a heartfelt lifeline is just incredible. You guys are incredible. You've helped keep me sane.

New day, new goals. Thanks for hanging in with us!

xo

Day 33

2009-11-25T04:13:00.004-07:00

A shower, trach removal and a Mountain Dew. Could life get any better?

Hubby brought the Big Kid sushi from "their" favorite restaurant (got an ok from the dietician). He also brought his hair clippers and beard trimmer.

So the two had Dude Night last night. A little sushi, a little manscaping and a couple of episodes of NCIS.

Can't wait to see how the kid looks when I get there this morning.

xoxo

Day 32

2009-11-24T05:42:00.001-07:00

Another good day. The physical therapist worked with Big Kid's legs and got them tuned up with his brain. The occupational therapist worked with his upper body and hands. I asked if she could leave a few items for him to work with when he was alone, so she left a ginormous rubber band, some hand weights and a squeezy thingy. When he was working his chest muscles, it compressed his lungs and he was able to hack out a lot of stuff.

The physical therapist got the kid to sit up on his bed with his feet on the ground. This is the first time he's been vertical in over a month. He turned green and listed like the Titanic before she went a$$ over teakettle. The PT then tried to get him on his feet, but it was too hard.

"Do you want to get back into bed?" the PT asked. Big Kid shook his head and held up his index finger.

"One more time?" The boy nodded. And up he was.

He was only on his feet for a few moments, but long enough to get him into a chair. His whole body was shaking with the effort. He was able to sit there for almost a couple of hours before he was worn out.

A couple of nights ago, Big Kid dreamed he was dead. He still doesn't consciously remember anything, but I suspect that over time some of the memories will come back. This was a perfect opportunity to tell him that he'd been in the hospital for quite awhile.

He was ok. Totally ok with it. No panic at all. Thank heavens!

Amazingly, since he's woken up, he hasn't experienced any panic attacks. He's remarkably calm. His emotions are very close to the surface---no surprise---but he says he hasn't felt any panic lurking around. He cries when it's time for us to leave and begs us to take him home, but knows that we can't. He has a phone by his bed now, so he can call us at any time.

Today, if all goes well, they're going to take the trach out. Wonderful big step!

I'm worried about his affect. It's very dull. Cognitively, he seems to be ok, but he's very slow to respond when spoken to and stares off into nothing quite frequently as if he was drugged. If I didn't know better, I'd think he was sedated, but he hasn't had any pain meds or sedation for almost 5 days now. He still can't write, although he seems to be able to spell and read without much difficulty.

I don't want to go there---the possibility that he has brain damage from oxygen deprivation---at least not yet. I think that possibly he’s being overmedicated on his psychiatric meds.

They’ve been worked to balance out the stimulant medication he takes for ADHD. The stimulants make him manic, and some of the others counteract that. He hasn’t had the stimulants or any caffeine since he first fell ill. Maybe he’s getting too much depakote now. I’m going to run that by his doctor when he rounds later on this morning.

Wish us luck on the trach removal. Big Steps!

Xoxox

ATM

Day 31

2009-11-23T04:02:00.006-07:00

Sorry I didn't write yesterday, but I had a little accident of my own on Saturday. Fell on my face. My face is ok, but my knees (which took the brunt of it) look like a couple of ruby red grapefruits, and I wrenched my shoulder. Chevy Chase would be so proud.

I just didn't have the gumption to face the stairs to my office (and computer). My bed and a couple of ice packs were just so much more appealing. ;-)

Big Kid is doing really well. He's miserable and anxious to come home, which is a good sign. Not the miserable part, but it shows that he is motivated to get better.

Apparently none of the therapists work on the weekends. So he has been trapped in his bed without any forward momentum or activities to keep his mind busy. I put his contacts in yesterday so he can at least watch the TV, but he isn't much of a TV watcher.

His legs are pretty weak, and not obeying the commands from his brain very well. He and all his sheets slide down to uncomfortable positions, and he can't get his legs to work to push himself back up. So he has to wait until the nurses come to pull him upright.

The first thing Big Kid did when he could talk was start demanding that the trach come out. It hurts. The head Respiratory Therapist told him it had to stay in for a few days, just in case something went wrong, because they wouldn't be able to put it back in, and then where would he be? Why didn't he try to work up to singing to show how well he was doing?

Then she wrote orders that he was to have nothing but small sips of ice water and left for the weekend (hence my Stooges imitation. I was going to get him ice water when I tripped on a cart in the hall, fell into another one, and landed on my face. This will forever be known in the annals of Attila family history as "The 'SHIT!!' Heard Round the Ward").

The kid laughed so hard that I threatened to hobble down to the cafeteria and bring back a sausage biscuit to eat in front of him.

Every time a nurse or respiratory tech come in, he serenades them with Mettallica. Except it sounds more like the Budweiser Bullfrogs with strep infections.

The second thing Big Kid did was demand that the catheter come out. He'd had two urinary tract infections already, and it hurt. The nurse warned him that he'd have to take care of his own pee-pee needs because she was too busy to come in and hold "the jug" for him every time he had to go. He agreed, which essentially contracted anybody who is visiting him to jug duty, because what's he gonna do---go get it himself? LOL But that's ok, Kitty, Hubby and I are glad (mostly) to do it.

The kid is Hungry with a capital "H". He started up on Saturday. Every time someone would ask him how he was, he'd say "I'm hungry!" The nurses and RTs would have to remind him that he'd have to wait until the Head Respiratory Therapist came back to work because the only orders they had were for him to have small sips of ice water. Monday was far far away.

When the pulmonologist came in to do rounds, he asked Big Kid how he was. The kid knew the power structure and put on his best soulful puppy-dog face. This was his big chance.

"I'm Huuuuuungry!", he moaned pitifully. The doc asked the RTs if there was any reason why the kid couldn't have a little applesauce or ice cream----had he been aspirating any water (the reason for the blue dye) at all? No he hadn't, but they didn't want to countermand the head RT's orders.

I guess she must be hell on wheels when she's in town. ;-)

The doc decided the kid could have a cup of ice cream with blue dye. That way, when they suctioned his chest, they would be able to tell if any went down the wrong tube.

So that's how I ended up getting to both feed my kid with a spoon, and wipe his other end as well. Something I haven't done in about 20 years.

When I got there early yesterday morning, he was at it again. "I'm Hungry!!"

The RT gave him a little lecture about how his orders are only for ice water, and that while the doctor allowed him to have ice cream yesterday, it really wasn't the doctor's purview and that he wasn't in charge of that, only the head RT was. The boy looked at me with a mournful expression.

"Well, Honey, " I said, "She's the boss, Applesauce."

"No", the RT sang out. "She's the boss OF applesauce!"

The pulmonologist came in about an hour later. Big Kid's right lung is clear. Hallelujah! The left one, which was so bad, shows no sign of active pneumonia, just a bunch of leftover crap that needs to come up. Joy!

He asked Big Kid how he was doing.

"I'm soooooo Hungry!!!"

The doc turned to the RT. "Was there any dye in his chest after he ate the ice cream yesterday?"

"No."

"Then I don't see why he can't have a tray of soft food."

The RT blanched. "That's what I was telling them," he said. "That it's YOUR decision."

Why that little lying toady. I gave him the stink-eye.

There is some odd undercurrent of political infighting between the nurses, RTs and the doctors at this place. I don't like it, but as long as they're doing their jobs and getting my son well, I'll live with it.

However Hubby, Kitty and I have decided that we're going to continue with our almost round-the-clock shifts. Although Big Kid is making a good start at advocating for himself, until he is stronger, it would probably be best to have a second person with him to keep an eye on things.

Thanks so much for all your continued good wishes and comments!

Day 29

2009-11-21T05:04:00.003-07:00

Yesterday, Kitty and I switched shifts with Big Kid because she had to work in the afternoon. At about 11am I got there and poked my head in the room.

"How's our guy?"

She jumped up and ran to meet me at the door. "We have a surprise for you!!"

I stared at her for a minute and then burst into laughter.

Her lips were blue. Cobalt blue. And there were blue smudges on her cheeks. Oh golly, I hope that stuff doesn't stain. ;-)

She led me into the room towards Big Kid.

"Hi Mom!" he croaked. And smiled a huge blue Smurfy smile.

Better yet, he is off the vent and breathing on his own. They're going to keep the trach in for a few more days, but he's breathing completely on his own with oxygen from a nose hose.

Joyjoyjoyjoy!

I'll fill in the details tomorrow, but he wanted me to thank all of you so much for all the concern and prayers you have sent to him for his recovery.

And he wanted me to post this to you (you can click on it if you dare to see his blue teeth up close and personal):

Day 28

2009-11-20T04:31:00.000-07:00

Another pretty good day. A few bumps in the road, but hey, what are a couple of small bumps compared to the hurdles Big Kid has already overcome?

I left a message for his neuropsych about how best to deal with the "lost time" issue, and he called and spoke to Hubby while it was my turn at the care center. Apparently his on-call doctor 2 weeks ago didn't bother to notify him that his patient was in the ICU, so he had no clue of what's been going on for the past 4 weeks. Needless to say, he was shocked and more than a little ticked off.

He told Hubby that we need to get the boy oriented to time as soon as possible, and to start introducing it as gently and vaguely as possible. Such as, "you've been in the hospital for quite a while", etc. He's going to work with Big Kid's new primary doc at the care center in case any more issues start popping up.

Our son's wide awake now. He lit up like a lightbulb when I first came into his room.

"I love you" he mouthed.

Oh my boy, my heart, I love you too. You have absolutely no idea how close we came to losing you.

He has pronounced fine motor deficits. It could be residual sedatives and stuff, or just because he's out of practice from being sick and sedated for so long. It's too early to say for sure. When I got there, he was trying to write on a clipboard, but was completely unable to. He could, however, point to letters on a board so I could write them down. (He can SPELL! He can SPELL! Hallelujah! )

The first word he spelled out was "Bette".

"Better? You want to know if you're better?" He shook his head and pointed to the word again.

"Bette? Oh, you mean Kitty's mother?" He nodded.

Bless his heart. He wanted to know how Bette, Kitty's 87-year-old mother was. She had fallen ill about a month before he did, and was recovering in a nursing facility. He and Kitty had been visiting her every day before he got sick.

The staff came in to work with him. The plan for the day had shifted from getting him on his feet to getting him talking since he was desperately trying to communicate. He was semi-sitting up, so that was a good start, and he was able to indicate when he thought his chest needed to be suctioned out which is a great sign. He's not apathetic and wants to participate in his own care.

They switched the ventilator settings and one of the tubes in his throat. With this tube, you can cover up a portion of it and try to talk. Then they asked him to shout as hard as he could, and he was able to produce a couple of light sounds. At the third or fourth try, the poor guy threw up all over the place.

After they got him cleaned up, the speech therapist painted his tongue a bright cobalt blue. This was to help them to be able to ascertain whether he is swallowing the secretions in his mouth or aspirating them. If the crap came up blue when they suction him, then it is going into his lungs. The kid looked like a smurf exploded in his mouth.

Pointing to letters on a board is exhausting, so we tried lip-reading for awhile. I asked him to be patient with me, because lip-reading isn't one of my skills. "Tell you what," I said. "If I don't understand what you're trying to say, I'm going to pretend you're telling me that you love me, and I'm going to say 'I love you too!' back atchya. Ok?"

He gave me the thumbs up.

Without the sedatives, he is actually doing a good bit of breathing on his own. They're going to start trying to actively wean him from the vent. Baby steps.

When Kitty got there, she brought his Ipod. I borrowed a docking station with speakers from The Happening Dude, but neither of us girly girls (or old ladies---take your pick) could figure out how the darn thing worked. When Hubby got there in the evening, he was able to figure it out, so the kid has his tunes now.

Hubby stayed with him through South Park, and until they got him to sleep. At one point, Big Kid indicated that he needed to go to the bathroom, but was refusing to poop in his bed. They were able to get him on a bedpan and accomplish the mission. Joy!

4 weeks. Geez. Thanks so much for sticking with us and for all your support.

Day 27

2009-11-19T06:27:00.002-07:00

I don't know how to describe yesterday, other than---wow! Joy has definitely overtaken hope and is ahead in the race.

Where to start?

At 2pm, Big Kid was transferred by ambulance to the acute care center. Hubby was at the hospital to watch over the "packing up" and Little Guy and I were at the center to meet the "delivery". They had given Big Kid an extra dose of the sedative so he wouldn't freak out on the ride, and the plan was to hook him back up to it when he arrived.

When he got there, he was flailing around the best he could (he was strapped down to the gurney) and the paramedics and nurses kept telling him everything was ok, and to calm down. After they got him settled in his room, and hooked back up to everything, we were allowed to go in and see him.

The first thing I noticed was that his legs were going again. Up and down, up and down. Slowly, but he was on the move. ;-) The second thing I noticed was that he wasn't restrained, and his hand was creeping up towards his trach. "Stop him!", I yelped, remembering all the tubes he tried to pull out before.

I guessed the sedative started kicking in, because the kid went still. Except for the feet.

The doctor and nurse on duty explained that unlike the ICU, they wouldn't be checking on him every ten minutes so that he could get some quality rest. The worried Mommy (which would be me) didn't like this a bit. What if he needed help? What if he flipped out again? He's in a private room without windows for staff to look in.

I told the doctor how important it was that Big Kid be restrained until we get the psychiatric issue sorted out. What if he came out of the sedation and nobody was around and he pulled things out? Sure at this point, all he has is the trach and the stomach tube and the pic line, but those are seriously implanted objects.

The doctor said he'd write the orders, and then laughed. "The nurses aren't going to like this."

I looked at the nurse. "We don't agree with using restraints."

I didn't say anything but kept looking at her. She started again. "Our patients are all adults. If they want to throw themselves out of bed, then that's their right. If he knocks out the vent tube, the alarms will go off."

Hubby could tell that I was building up a head of steam. "Honey," he said gently. I ignored him.

"Those patients can do whatever they like with themselves," I said to the nurse. "But my son has a mental illness. Unless you can be absolutely sure that he is in a rational frame of mind, you can't leave him alone unrestrained. Because if you do and he yanks out that stomach tube (which doesn't have an alarm)..." I let it hang with the obvious implication of "I will hold YOU responsible if his guts come out with it and he bleeds to death in here."

"Honey," Hubby said again. Softly. "Look at him. He hasn't been on the sedation for almost two hours."

Wha?? They didn't hook it back up?

The kid was laying still, watching us, and taking it all in. He wasn't flailing, or kicking, or trying to kick himself out of bed. He was totally calm. Groggy, but calm.

The Resperidone was working. Oh golly.

The doctor went over to him. "Big Kid? Can you show me your teeth?" The boy bared them in a grimace. "Can you show me your tongue?" Out it came.

"Can you move your right foot?" The kid moved his left foot.

"Can you move your other right foot?" He did. Deja vu. ;-)

"Can you take your right thumb and touch your right ear?" He tried to touch his left ear with his left thumb, but hey, in normal life, the boy would get the two mixed up from time to time anyway.

After the doctor left, I sat down next to Big Kid. "Sweetie, do you know where we are?" He shook his head. I explained to him briefly, and asked if he understood. He nodded. His hand came up to the trach, and he didn't try to pull it out, he just tried to feel the alien object stuck in his throat.

"Do you know what that is?" He shook his head. I told him that his lungs were very sick and it was a tube to help him breath. He wasn't to pull on it, did he understand? He nodded. I did the same with the stomach tube and the pic line. There were a few tears, but he seemed to understand.

Little Guy sat with him while we filled out paperwork with the case manager and nurse. "I'm here to comfort you," he announced. "I've been worried about you and I had to get a swine flu shot so I don't get germs. But I was brave." Big Kid reached out to hold his hand, and they sat there silently together.

Hubby, Kitty and I have worked out a schedule so that we will be with him almost around the clock for the next few days until we are sure the sedation is completely out of his system (it hangs around in whatever body fat there is and takes a little while to metabolize), and until we are sure that he knows how to use the call button. I know that sounds kind of silly, but we know him and how panicked he can get. I'm going to take the mornings, Kitty the afternoons, and Hubby the evenings until they give the kid something to sleep.

The treatment plan is an aggressive one. They're going to get Big Kid on his feet today, if they have to have 4 people hold him up, vent and all. Once he gets moving, it will be easier for his body to get all that crap in his lungs out.

Last night, Hubby stayed late with Big Kid and they watched South Park together, like they used to do when the boy lived at home. He said that the kid chuckled along although he couldn't see very well (no contacts). Hubby asked him if he remembered anything, and Big Kid shook his head. When Hubby explained about the H1N1 and all the resulting complications, he threw up his hands with a shocked "WTF" look on his face.

We didn't tell him it's been almost a month. We're going to call his neuropsych today to get advice on how and when to best deal with that. Apparently with some people, "losing time" can be a real issue and leave lasting trauma.

He's back. Our boy's back. He still has pneumonia in both lungs and is facing a long stay in rehab, but the corner has been turned.

I can't begin to tell you all how grateful we've been for all of your concern and support, my friends. Your continuing prayers and well wishes for healing are most appreciated.

Joy. Overwhelming joy.

Day 26

2009-11-18T05:18:00.003-07:00

Today they're going to move Big Kid to the acute care center which takes care of people who have to be on ventilators long term. They had planned to do it yesterday afternoon (kind of sprang it on me when I got there), but there was some insurance paperwork to clear up, so they put it off until today.

Many of the ICU staff who have cared for him in the last 25 days had heard about the big move and stopped by to say goodbye and offer reassurances that the center has an excellent reputation and success rate for recovery.

As much as I've come to despise this place, it's almost like leaving family. The valets who park our cars, the security guards, and even the cleaning staff have kept up-to-date on Big Kid's progress through the hospital grapevine, and have offered us so much hope and encouragement through this ordeal. One of the cleaning ladies gave me an embroidered cross on a ribbon to hang over the boy's bed in the new place, and another placed her hand on my arm and said in broken English, "That's a good place! They fix him like new! You see!"

For some reason, to be honest, her ringing endorsement has given us more confidence than any from the specialists.

Dear, dear people. After seeing them day after endless day, they've been woven into the pattern that makes our life.

Big Kid is on 40% oxygen, and they still have him moderately sedated. No change on his lungs. The happy feet have come back, and he is constantly "walking" again. About every third "step", his gown would flip up and expose his stuff.

"You know," I said absently after flipping it back down for the gazillionth time, "we're going to have to start calling you 'The Flash' 'cause you keep showing your junk to the world."

He smiled. A great big goofy smile.

I distrusted it, so I took a sniff. The day before, I'd mistaken an enormous fart smile for a "happy to see Mom" smile. You know, fool me once....

No stinkypoo. It was a smile for Mom. :-)

I looked around to make sure nobody was watching and bent over. In my best Cartman (from South Park) imitation I said, "Moooooom! Git yer bitchass in the kitchen and make me some pie!"

Another big goofy smile. A little drooly, but bright as day.

He's in there. I can feel it. I can feel the part of him that makes him him. We just have to figure out how to get him out in one piece.

Wish us luck on the move. And thanks so much for hanging in with us.

Day 25

2009-11-17T03:59:00.002-07:00

Overall, yesterday was a pretty positive day. Something seems to have shaken loose, and the kid was on 30% oxygen for most of the day. They had to bump him back up to 40% late in the afternoon because he had trouble maintaining it, but it was another baby step in the right direction.

Big Kid's CT was normal, but he threw up twice. While we were there, his nurse drew out two huge syringes of stomach acid and bile, and they discontinued the stomach tube feeding for awhile. They did some kind of stomach scan thing overnight to see if there was anything twisted or blocked, but that was negative.

When we arrived, Big Kid got a huge, beatific smile on his face. Since his eyes were partially open, I thought he could see us and rushed over to say, "Hi Baby!!". But moments later there was enough methane in the room to strip a new layer off the ozone. At least something gastrointestinal is working right. Emphasis on the gas.

The nurse was a new one for us, and he was quite a chatty character. We mentioned that we had noticed that there were only 3 patients left on the board that belonged to the pulmonologists. All were there from complications from H1N1.

"Your boy is very lucky," he said. "One of those boys had a stroke, and another is paralyzed."

Oh no. Nononononononono. Those poor, poor baby boys.

These were also complications that never occurred to us. Big Kid is being treated for blood clots in his arms. gah

When we got home, The Happening Dude was on the phone to his girlfriend-of-the-week. "I gotta go," I heard him say. "My parents are home and I want to hang out with them."

Aww, his parents. He called us his parents! An unexpected and welcome balm to an aching heart.

Then I was immediately worried. What in the heck is wrong with him? What teenager (or "aspiring adult", as he calls himself) in his right mind wants to spend time with the parents? ;-)

The roads are clear, so I'm getting ready to drive down into the city and take the day shift with the Big Kid. Thanks again so much for taking the time to come by and check on us.

Day 24

2009-11-16T07:25:00.001-07:00

The G-tube procedure went well, and the kid had a restful day yesterday. It's probably going to be a couple of days until the Risperidone totally kicks in, so they're keeping him lightly sedated.

They took Big Kid to get a CT done late last night---which is the first time he's been stable enough to be transferred out of the room for a procedure. All of the other ones have been done in the room with portable units. We'll get the results this morning.

There was a little improvement on his X-rays again----after hitting another plateau, he's starting more baby steps in the right direction. They've been suctioning a large amount of crap out of his chest yesterday and through the night, which is really good. He's on 45% oxygen right now, and that's really good too.

I wasn't feeling very well yesterday. I don't know if it was a result of the vaccination I got a few days ago, or the onset of something else. Body aches, chills, massive headache---you know the drill. I can't take any over-the-counter cold and flu medications because of my heart, so I just went back to bed and conked out under plenty of covers for around 16 hours with a couple of periods of wakefulness in between. Hubby braved the snowy roads and stayed with the Big Kid until they brought him back from the CT and tucked him in.

Feeling just fine this morning, and we're going to head in late after the sun has had a chance to melt some of the ice on the roads.

I've armed myself with a secret weapon----printed out a haggis recipe and tucked it in my purse. If I feel like I'm going to lose my cool, I'm going to pull it out and measure the offender---Sweetmeats or any other---for a pot. I got lots of pots to choose from. I've even combed my hair.

But it seems like thanks to you all, my reservoir of patience has been refilled. Bless you.

Day 23

2009-11-15T05:25:00.001-07:00

I know I should be grateful that the weather has been as beautiful as it has for the last 10 days or so, considering it's November.

This morning, all I can think of is Bah! More snow! Driving down the mountain in this crap just ratchets up my own anxiety level about 10 notches.

Found out why Big Kid was no longer on Risperidone. Back when they consulted with his neuro-psych, they didn't actually consult with him. They consulted with the doctor who was on call for him. Of course, he didn't know Big Kid's history, and when he prescribed the Haldol (which the kid was on for a total of 2 days, because it wasn't working), they discontinued his Risperidone. ::sigh::

Since he was sedated yesterday, they stopped the anti-psychotic they were using and let it get out of his system. Started him back on the Risperidone last night. Hope to God it works.

The kid had a little bit of a urinary tract infection the other day, and a bad reaction to the anti-biotics. He came out in a rash. The infection seem to have cleared up, so they're going to go ahead with the feeding tube in his stomach today.

I'm trying so hard to be kind and patient to those around me. I'm a sharpish, no-bullsh*t kind of person by nature, so it's difficult, especially now, since the original numbness I've been engulfed in (between raging bouts of panic) is wearing thin.

I know I look like the dog's dinner. I've been dressing for comfort, not style. Yes, sometimes I've forgotten to comb my hair for a couple of days and just threw it up in a bun. Makeup? Heh. At least I'm clean though.

Anyway I can only imagine how I'm viewed by the medical professionals who are in and out and rotating. I know image can be everything. Most have been kind with my incessant questions, and probably see me as a frumpy, frantic mom with a permanently stunned look on my face. A couple of have been impatient, and talk to me like I'm 12.

I've been persistent though. If they want to me to sign for a procedure, I need to have all the facts. If I don't understand something, I'm going to ask and ask for clarification until I do.

One impatient young medical professional started calling me "hon" over and over kind of in a snotty way. He wouldn't have dared if my husband was with me, and that alone annoyed the crap out of me. After the third time, I was thinking, "Pal, I don't care if you call me Attila or Mrs. Mom, but if you call me 'hon' one more time, I'm going to rip out your thorax and present your lungs to my son for a transplant."

And then of course a moment later I was praying, "Oh God, oh God, forgive me for being so nasty to this man who is trying to save my boy."

So on top of everything, now I have to deal with the voices in my own head. ;-)

Still no changes on the x-ray, and he's on 70% oxygen. He's resting quietly.

Thanks again for all your healing thoughts, and please send me the strength to have more patience.

Day 22

2009-11-14T04:44:00.001-07:00

Yesterday, everything went to hell in a handbasket.

It started the night before last after they had completely stopped the sedation. Big Kid totally flipped out. He was violently fighting everything---trying to pull tubes, kick himself out of the bed, throwing himself against the sides of the bed. gah

When I got there in the morning, he was restrained, but still at it. They'd had to dial his oxygen back up to 90% because he wasn't getting enough of it.

Sometime during the night he was prescribed a strong anti-psychotic, but it didn't seem to be doing much. The nurse or I would hold him down and tell him sternly that he needed to calm down. He'd go limp for a few minutes and then start right back up.

They had to replace one of the IV's in his arm. I don't know if the nurse who did it forgot to clip the restraint on Big Kid's arm, or if he somehow worked it loose, but I had to practically throw myself on him when he tried to pull out his feeding tube (it's in his nose).

At one point, I thought he was having a seizure. He went completely rigid and his back was arched about 3 inches off the bed. His face was purple, and his heart rate skyrocketed.

"There is something very wrong!" I called out to the nurse. "We need to do something!"

"He's on the maximum dose allowed right now."

"Well it's not working", I snapped. We had been waiting for the anti-psychotic in IV form, but it was taking forever. Finally she got a syringe and plunged it into his arm. It calmed him down. A little.

In the afternoon, they put him back on the sedation. Then I drove 3 hours back and forth with the guys to get our flu shots.

When I got back, the hospital called. The doctors wanted to put a feeding tube into his stomach, because the one in his nose was obviously a comfort issue, and it looks like he's going to be on the vent for a lot longer than hoped.

They can't wean him off the vent until they wean him off the sedation (it represses respiratory functions), and they can't wean him off the sedation until they can control the psychiatric issues.

Something about this had been tickling what's left of my brain all day. I woke up at 2:30 this morning and I recognized the pattern.

Rapid-cycling. He's having rage attacks.

A couple of years ago before we found the right cocktail of meds, Big Kid would have uncontrollable rage attacks. Of course he could control them to a point, but if he went over it, the attacks would get too big for him to stop. He would cease for about 10 minutes or so and then start right back up again, like he was stuck in a loop. Unless we could hold him down and practically shovel his meds into him, he would go on and on and on for hours until he finally collapsed in exhaustion.

He's been stable for more than a year on his meds. And the hospital was continuing them this whole time. Right?

I called the night-shift nurse and asked her to please make a note about this to the doctor when he rounds early in the morning. I'd be in shortly after to talk with him about it.

She said, you know, I've been going over his chart tonight and reviewing the meds he's on, why don't we check it against the meds he normally takes?

So we did. They're not giving him one med, because it's for high blood pressure, and since he was having so many issues with his pressure, they were doing something else.

And he's not on Risperdone. Which he takes to control his rage attacks.

There isn't any notation of why he isn't on it. It could be that it was overlooked while they were busy trying to save his life, or it could have been contraindicated with other medication so they replaced it with something that isn't working. If that's the case, I could have told them that we've been through the pharmaceutical gamut and nothing else had worked. ;-)

Please pray that this is the answer. Our boy is really suffering. I can't imagine the case of the screaming meemies he must be having, and the horror of not being able to express it.

Thanks again for all your good wishes and comments.

Day 21

2009-11-13T04:21:00.001-07:00

Three weeks. Good Lord, three weeks.

Big Kid is down to 40% oxygen on the ventilator and 8 something of Peep---volume pressure.

They weaned him off the sedative and for the first time in 3 weeks, he's awake. Groggy, but there's somebody home.

In the next few days, as he comes out of it, they're going to start trying to determine if there is any major brain damage due to oxygen deprivation.

The nurse took his hand and leaned over him. "Big Kid, you're in the ICU. You've been very sick, but you're getting better. Can you tell me if you're having any pain?" The boy's hand fluttered up near his throat where the trach is.

The nurse went to get some pain meds, so I took his place.

"Hi, Sweetie!" I chattered at him a moment while he kept trying to focus on my face.

"Do you want me to bring you some music?" He made a movement with his head but I couldn't tell if that meant yes or no.

"How about some Britny Spears?" He shook his head with a definite no.

"How about some David Bowie?" He nodded vehemently. Well, at least his taste in music is intact.

He gave me a blinding smile.

Oh my boy, my precious boy.

Then he started sobbing. He's frightened and confused.

Oh my boy, my baby. I'm so sorry.

This morning I'm going to meet with Big Kid's doctors and a representative of another facility they're going to try to move him to in a few days. This facility only deals with long-term ventilator patients who are no longer in need of acute care. His lungs are still bad, especially the left one, and he probably won't be able to breathe on his own for a long time.

Afterwards, THD, Little Guy and I are scheduled to get our flu shots. I guess I didn't realize that I'm in a high risk category, but I am and our doctor is persistent.

Thanks again for all your continued support. It really does mean a lot.

Day 20

2009-11-12T04:00:00.000-07:00

Eh, two steps forward, one step back again. But as one commenter wrote---it's still one step forward.

They weren't able to lower the volume enough yesterday to do another SBT, so the trach is in. He's holding steady at 50% oxygen on the general vent.

The docs are going to work on lowering his sedation during the next couple of days so that he'll be more conscious and hopefully able to communicate. Soon a physical therapist is going to come in and assess his condition.

His feet are still moving constantly. Up and down. Up and down. I think he's crossed the state line and is somewhere in Nebraska. ;-)

Thanks so much for your continued good thoughts and prayers.

Day 19

2009-11-11T07:26:00.000-07:00

Well our guy is as unpredictable as ever. Maybe he overheard the staff talking about traching him and it told him he better get a move on.

Yesterday Big Kid was able to breathe on his own without the ventilator for 15 minutes. They were able to dial him down on the bi-level vent to 35% the night before, so they decided to give him a SPT (Spontaneous Breathing Test). They have taken him off the bi-level and now he is on the general vent.

He's also no longer in isolation, so we don't have to wear the masks any more.

Joy and hope are fighting to see who's going to come out on top.

They're going to do another test this morning with less sedation. Then they'll decide whether he'll need a trach after all, or if they might be able to wean him off the vent entirely in the next couple of days.

Big Kid's x-rays on the bad side are showing consolidation----meaning the areas around the main infected spots are starting to show through. Or something like that.

Hope is still the frontrunner, but joy is trying to catch up!

Day 18

2009-11-10T04:14:00.002-07:00

The days just seem to be running into one another. I looked at the calender yesterday and thought Holy Smokes! We're a third of the way into November! It's like we're stuck in some freaky limbo while the rest of the world speeds by. Thanks again for hanging in there with us.

No improvement on the lungs or getting the oxygen down. Big Kid can't seem to maintain his saturation levels under 45-50% oxygen. The doctors are planning on doing a tracheostomy on Wednesday.

The bundle of screams are back.

Logically I understand the reasons for this. It will be easier to care for. The back of Big Kid's mouth and throat are getting pretty beat up. It looks like he's going to be on the ventilator longer than hoped. He's not sicker, it's simply taking longer to get better.

I just can't get past the idea that they're going to cut into his throat. His throat.

On a more positive note, yesterday his nurse and I stood on opposite sides of his bed holding his hands.

"Big Kid, can you move the toes on your left foot?" She asked. He moved the toes on his right foot.

"That's great! Can you move the toes on your other left foot?" He did. ;-)

Two good friends in blogland have swine flu hit their families. If you could send some healing thoughts and prayers to Kim's son and Ashley's Mom, I would be most grateful.

And thank you for all your kind blessings.

Day 17

2009-11-09T04:29:00.001-07:00

Yesterday was a good day. I let Hubby sleep in and went into the city early myself. Poor man, he's so tired too, and he's been such a rock for me.

When I got there, I bent over Big Kid and did our "thing". I haven't done it since I wrote about it earlier, because it's powerful, and I don't want to waste it.

Blublublublublua!

If he hadn't been restrained, he would have shot right up. He had my hand in a kung-fu grip and struggled to sit. Whoa!

His nurse came in, and rushed to adjust his sedation.

"Lay back, Honey, " I said. "Do you know where you are?" He nodded his head.

"Do you know who I am?" He nodded his head, and tried to form a word around the tubes.

It looked like he said Mommy. Maybe that's just wishful thinking on my part. He finally gave me my thumb back and he slipped off to sleep.

His feet and legs are in constant motion, like he's slowly riding a bicycle. One knee comes up and down. Then the other. He has those pressure thingys on his calves to keep him from getting blood clots in his legs and he rubs them together like he's trying to get them off. As long as he isn't panicking, they're not too worried about the movement. It's helping his circulation.

My mom brought Little Guy to the hospital late in the afternoon so I could take him home with me. Hubby had just gotten there to take a shift with Big Kid. Since it was Sunday, there were very few people in this wing, and we decided to take a chance and let him see his brother. He's been obsessing on it terribly, and we've been worried that maybe his imagination has gotten the better of him.

So we did everything but wrap him in Saran Wrap, and whisked him up to the ICU. We showed him the tubes and the IVs and explained what each was doing. He held Big Kid's hand and talked to him in his Marge Simpson voice. Then I rushed him home and practically hosed him down. ;-)

There's been no changes on his x-ray, and he's holding at 45% oxygen on the bi-level vent. They've been able to wean off some of the pressure needed to keep his lower lungs open. Baby steps.

When he grabbed me, his grip was strong. Really strong. That more than anything has given me hope today---hope that he can beat this.

Day 16

2009-11-08T05:04:00.000-07:00

Yesterday was a good day. No changes, but each day he gets a little bit better. He has an infection in one of the lines that goes into his chest, but they're going to take care of that with antibiotics and move it to his arm.

Ever noticed that healing metaphors often refer to places...ie; out of the woods, turn the corner, on the road to recovery, light at the end of the tunnel?

I don't think I've heard so many in so short of time. ;-)

Did I ever tell you guys how much I appreciate your support? I do. More than I can ever say.

Day 15

2009-11-07T06:43:00.002-07:00

Another endless day, but another day I can rejoice that our boy is still alive.

Big Kid's healing seems to be picking up some momentum. He's down to 50% oxygen on the bi-level, and they've been cutting down on his sedation. Most of the patients with this in the ICU turned the corner right after the 2-weeks-on-the-ventilator mark, and they're hoping the same will happen with our guy.

Apparently the new drug he was on can't be used for sustained periods. So he got a couple of days of complete rest without panic attacks. They called in his neuropsychiatrist to consult on the issue, and they switched him to a milder sedative and Haldol. He's not freaking out when he comes up, but his feet are almost constantly moving like a dog having puppy dreams.

Hubby made me stay home yesterday to sleep, since I haven't had a full night since Big Kid got sick. He's worried about the stress level and my heart condition. I scared the heck out him the other night (and yes, myself as well).

I woke up in the middle night feeling as if my chest was being crushed. This is it, I told myself. I'm not going to be able to see Big Kid through this. I tried to lift my arm to touch Hubby to wake him and I couldn't, so I cried out.

It was my bra.

No kidding.

I accidentally fell asleep with it on, and with all my tossing and turning, the darn thing rode up and was strangling the girls.

So Hubby stayed with the boy and I zonked out for about 6 hours with my own oxygen tank. It was wonderful.

We're off to the city to be with our guy.

Thanks again for all of your prayers and healing thoughts. I'm sure that each and every one of them are helping.

Day 14

2009-11-06T04:19:00.002-07:00

Well, as how this seems to be the way this illnesses is running, it's two steps forward and one step back. Or actually you could say it was 5 steps forward and one step back, so we're not panicking. The docs put Big Kid on the bi-level vent yesterday, because the regular old vent just wasn't cutting it. His lower lungs needed some more pressure to stay open for oxygenation.

The new sedation is working wonderfully. As I said in a previous post, we were really worried that maybe he was having a panic attack every time he woke up and that's why his heart rate and blood pressure were all over the place because he was coming out of the paralytic every hour. This med is somewhat new, and works somewhat the way clonopin (anti-anxiety med) does. When he wakes it's pretty smooth without all the fighting of the vent. A blessing.

His white blood cell count is up, so that means his immune system is finally kicking in to help fight this. Another blessing.

They've been trying to dry the boy out because of all the fluids they originally pumped in him to keep his blood pressure up when it bottomed out from the septic shock. He peed out 14---yes 14 liters---in one day and lost 6 pounds. Holy smokes.

On a related note, it seems like his kidneys are working just fine. ;-)

We saw his xrays for the first time yesterday. They're horrific. Absolutely just----I can't put it into words. 2/3s of his left lung is a solid mass of white. The right one is much better. They put two xrays side by side---the one from when he was admitted, and the latest, so we could see the progress. It didn't seem like much to us, but the nurse pointed out the areas of improvement.

I simply cannot grasp how this could have happened so fast. So very fast. Seeing his xrays has been a shock.

And I can't believe it's been two weeks.

Thanks again so much for all your kind wishes and prayers. Sharing this with you has helped lighten an unbearable load, and I really appreciate your encouragement and support.