Thursday, December 31, 2009

Happy New Year

Sorry I dropped off the grid, but the events of the past couple of months finally caught up with me. I caught a cold and threw my back out right before Christmas. Since I think I was physically and emotionally exhausted on top of it, I just collapsed for a few days. Luckily I had minions (or would that be elves?) to pick up the slack, so the holiday went smoothly, if a bit painfully.

Big Kid is doing really well. He has one more in-home physical therapy appointment, and then he'll be going to out-patient therapy. We've been able to wean him down a liter on oxygen. Woohoo! He's frustrated by the slow progress of his recovery. His physical therapist told him that for every day he spent in the ICU, it will take a week of recovery to get back to where he was. If that's true, I have to keep pointing out to him that he's way ahead of the game.

He's having trouble with his short-term memory. In a couple of months he's scheduled to have a complete neuro-evaluation to see what the impact is.

One really good thing that has happened is regarding his health insurance. Since he turns 23 in a couple of days, his insurance was going to run out. I've been scrambling to try to get him medicaid on disability, or signed up for the Colorado resident discount program. Turns out that there were changes in his dad's plan in the last year and they will continue coverage until he's 24. Thank heavens.

Last week we took him back to the ICU to show him where he had been and to thank the staff for saving his life. I brought them two huge bandboxes filled with individually wrapped snacks---trail mix, crackers, cookies, etc and a variety of cocoas, teas, and chai for their break room. There is no adequate way to express the gratitude we feel for having our boy back, but hopefully this will help.

Today is our wedding anniversary, so Hubby and I are planning a romantic dinner out sans children. The fact that they are all (just about) legally adults has not stopped the grumbling, especially from Little Guy who ended up coming with us last year.

Too bad, so sad. My heart bleeds for them. LOL

But I suppose with this full house, running around nekkid and scaring the dogs is out of the question.


Hope you all have a wonderful new year!

Wednesday, December 16, 2009

Day 54

Sorry I haven't had much time to post, but between Christmas stuff, Big Kid stuff and everyday stuff, there's only so many hours! Slowly but surely, I'm getting around to visiting all of you kind people who've kept up with us.

Big Kid is having his ups and downs. We haven't been able to lower his oxygen any because in 20 minutes or so, his saturation level drops to the low 80s.

He's working hard on his PT and OT exercises. Both therapists are pleased with his progress. I suggested they incorporate loading the dishwasher in the exercises, because bending up and down is good for him, right?

Yesterday we had a bit of a scare because when he woke up, he was coughing up some blood. Blood of any kind is worrying, because he's taking fairly high doses of cumadon (sp). If it was coming from his lungs, that's even more of a crisis. So we had to run around and find out where it was coming from. Apparently he had a bloody nose while he was sleeping, and instead of coming out his nostrils, it went down the other way.

Gross, but whew!

Kitty stayed the weekend and helped keep Big Kid occupied, which was a blessing. When he's bored he makes everyone miserable, even though he is trying hard not to. He gets so anxious that I can't even use the bathroom without having him knocking on the door asking me if I'm going to be long. ::sigh::

She's coming again this afternoon so hopefully I'll be able to run out and get some errands done that I haven't been getting around to. Like buying Xmas cards. ;-)

Later Gators!



Friday, December 11, 2009

Day 49

Oh golly, what a week it's been. As much as I love having my boy home and recovering, I am totally wiped out.

Since we weren't expecting him to be discharged to us so soon, we were kind of caught with our pants down.

When they discharged the kid Monday night, the treating doctor from the care hospital went over his medications with me. Everything was the same until we got to the depakote. They had been giving him twice his prescribed dose.

"What should we do?" I asked the doc.

"Go ahead and give him his regular dose."

Uh no. We've been dealing with psychotropic meds for a number of years, and know that drastically cutting a med can cause a bad case of screaming meemies at best, and possibly a seizure at worst. So first thing on Tuesday morning, I called Big Kid's neuropsych and explained the situation to the receptionist. I left an urgent message asking the doc to call to give us some guidance on what to do. No return call on Tuesday. I called again first thing on Wednesday, and left another message.

The receptionist was completely unconcerned and said that the doctor hadn't received the message the day before. They had closed the clinic due to snow.

Well, SOMEBODY was there to take the initial message, I argued. Couldn't they have let the doctor know that one of his patients had an urgent situation? Did the phones automatically stop working every time it snowed? She was unimpressed.

By 4 o'clock there was still no return call and I was getting frantic. I called Hubby and asked him to give it a try. He called me back and said I'd probably hear from the doctor within an hour. I did, and the doc was none too pleased. Hubby had chewed his receptionist out after getting the same blase treatment I had received and told her the next call would be from our lawyer. Oy.

I got a long non-explanation about how since he wasn't the doctor who doubled the dose and had no idea why they doubled the dose that he couldn't help us. I finally got frustrated with him and said, "Look, you're the original prescribing physician. Who the heck else are we supposed to call? All I want to know is, is it ok to go from 2000 mg of depakote directly down to 1000mg? Can you give me a little advice here?"

No, no, not good to do that. Why don't we keep him on the 2000mg dose until he can see Big Kid after the first of the year?

Fat chance. The kid is half zombie with overmedication. He's glassy-eyed and has the shakes. I called our family doc, who is now in charge of the boy's continued recovery. We worked out a tapering down plan. whew.

I think we may be looking for a new neuropsych soon. The lack of concern over the kid's situation bothers me. It's not like I called him after hours. You'd think within 2 days he'd get 5 minutes to return an urgent call. Then again, he might not want us back either, after Hubby went all medieval on the receptionist.

Big Kid has a large blood clot in near his armpit. So he has to take cumadon (sp) for a few months. The nurse has to come and check his levels every day or so. He gets physical and occupational therapy a few times a week. He's refusing to use the walker or a cane, so we have to walk with him to make sure he doesn't fall flat on his face.

One problem we didn't forsee was the fact that we don't have a walk-in shower. The kid can't lift his legs over the tub without one of us holding him steady and another lifting his legs. LOL Bathing has become a family affair.

We're in the process of purchasing a pulse-ox monitor. Luckily the insurance company is going to pick up a hefty chunk of it. The job of weaning him off the oxygen is going to be ours in tandem with the home-care team.

He's doing really good, considering that his projected stay at the acute care center was going to be 4-5 weeks. He was out of there in 2 1/2.

Big Kid is really glad to be home. Except for one thing. He misses the nurse call clicker thingy. LOL Yeah, for the first few mornings I got up at 3am to make him french toast and cocoa.

Yesterday I bought a bunch of microwavable breakfast foods and easy packets of Swiss Miss for him to fix by himself.

One day soon, hopefully we'll all be able to get on a reasonable sleep schedule.

Until then, click this, Baby. ;-)

Monday, December 07, 2009

Day 45---My Boy's Coming Home

Today at 12pm I got a call from the kid.

"You can come get me. I'm ready to come home."

What? On Saturday they told us it would be a week to 10 days. But yes, the doctor has cleared him to come home.

So we've been racing around all afternoon rearranging stuff and moving Little Guy upstairs to the loft.

Fortunately, the care hospital did all the arranging for the portable oxygen to get him home.

Big Kid is going to still need it 24-hours-a-day. And a walker. For awhile. The home nurse is going to come every couple of days to take labs, and we're setting up the therapy schedule.

Hubby is on his way to the city to get him, and I'm waiting for the oxygen company to bring the large concentrator unit.

My boy, my boy. My precious boy.

Joy unrestrained!



Friday, December 04, 2009

Ho Ho Ho and All that Good Stuff

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


Thursday, December 03, 2009

Day 41

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,


Tuesday, December 01, 2009

Day 39

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.