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. ;-)


Willoughby said...

I feel for you! When our daughter came home from the hospital, we were caught between her pediatrician and the docs at the hospital. One said one thing, the other said the opposite. So frustrating!

I'm so glad Big Kid is finally home with you. Tapering his medication sounds like a good plan. I hope it goes smoothly.

Jeanie said...

After I finished picturing all of you with your pants down around your ankles, I thought about how glad I am for you that he is home. You've come so far from a month ago. Wouldn't we all like to have one of those nurse clicker thingys!

Joanna Jenkins said...

Oh boy. That neuro doc is lucky he lived to tell the story! What a putz.

Glad things are settling in and you all clearly have your sense of humor :-)

Hang in there!


Chicago Mom said...

It is the worst kind of frustration when doctors won't call you back or when you realize you know more about the medication than they do. Thank goodness your husband got them to call you back, no matter what his method was, but I am glad to hear you want to change neuropsych's - this guy is a jerk for not calling you back within 24 hrs. Good luck!

yorksnbeans said...

It's all worth it since he's home, right!! ;-)

Beth said...

Sounds like the chaos that reigned once my mom got home from the hospital - adapting to new routines, getting care in place, etc. Crazy times. But so worth it, right?

Get some sleep!

Rootietoot said...

Bless all y'alls hearts! I'm sure he'll recover faster at home, because he'll have to! In the mean time, Merry Christmas!

Webster said...

Hang in there, Mom. About the shower - have you considered renting (or buying) a transfer tub bench? Takes the fear of falling away. All you have to check is that the curtain is not hanging over the edge!

gayle said...

It's so hard taking care of someone especially your kid. Good luck and be sure you do some fun things just for you (finding the time will be hard, I know)

Anonymous said...

Loving your Hubby right now, I am so glad you gave that receptionist hell. I hate people who just don't care, they shouldn't be working for doctors. On the other hand the doctor sounded like an ass too. I hate when that happens, leaving a hospital and no doctor wants to take responsibility, yet you need someone to. Thank God for Family Doctors.

It does sound a bit crazy and probably will be for a while, but to think of where he was, the fact that he is home is a true miracle. I'm very, very happy for all of you.

Make sure you keep taking time for yourself, getting your sleep and see if you can get those home care team hours bumped up, if it gets to be too much.

Still keeping you right next to my heart and in my prayers.

OHN said...

2000 mg to 1000 mg is a huge reduction. I am so glad you were able to work out a slow taper.

As for the neuro...I would dump his ass in a new york minute. Obviously "first, do no harm" isn't on his office wall.

I hope you continue to have wonderful progress at home :)

KL said...

Where are the bunny slippers of doom?? Get them out of the closet and insert in that doc's posterior!!

MoonNStarMommy said...

OMGosh I'm so behind!! I shouldn't be taking stupid blogging breaks cuz stuff like this happens and (wahhh) ... I am soooooooo sorry that you have been going through with this. I looked back and read why he's been sick and that's just scary. So many people think that H1N1 is nothing, and to read something like this, really hits home about it. We all had it, mildly. I'm so glad that he's home and doing better though. And I'd be pissed at that DR too!! {{BIG HUGS}}

The Quacks of Life said...

i'm so chuffed for you that he is home

Rootietoot said...

The ornaments are GORGEOUS! Y'all go get one...they're big and beautiful!

I'm so glad he's home!

Littlebit said...

I second what QWebster said - a tub transfer bench is the way to go. They run about $100-$150, depending on size and brand and the OT should be able to give some suggestions of where some local places are that carry them. If they're too expensive, you can look here: but then you have to pay for postage.

If a tub transfer bench isn't practical, at the very least get those suction cup grab bars that they sell in Bed Bath & Beyond - they're about $15 each. He'll stil need the assistance to get his legs over and hold steady but over time he will be able to do more of the work by holding the grab bar. Just make sure you re-suction them each and every time he goes into the tub!

St Jude said...

Admit it sweetie, you wouldn't have it any other way... he may be big kid but he's still your baby! It's great that he's home.

CiCi said...

Good thing you had the strength to stay on top of the situation and have a plan in place to lower the dosage and also to find a different doctor. That is quite a story. On top of the stress of the hospital stay and the scare you have all lived through, I hope you are on the way to some peace at last.

amy said...

He's one lucky boy to have a wonderful family to look out for, and care for him!! Hugs to ALL of you, SO happy to hear he's at home, and doing well!

Anonymous said...

Oh honey--prayers for you will still come from me. I hear you about those damn seizure drugs--I well recall the scary days of T reacting badly to depakote. Stay strong. Stay after those doctors.

Chris H said...

Hang in there, it is bound to get better. And remember, he is HOME and he is doing great!

Ashley's Mom said...

Sometimes you can also rent those bath transfer benches. I did that for a while for one of my parents. They really do work well...

I'm so glad he is home! How is he handling not having Miss Kitty around?

Traci said...

I am so glad that he is home and doing better but I am astonished at the behavior of the doctor and his staff. You have been through so much and for them to show such little care is eyond disappointing. I feel for you. Please know that I amazed by your strength and grace. You will continue to be in my prayers.

Anonymous said...