Sunday, May 1, 2011

Weekend in review

Tom took Murphy camping with the cub scouts on Friday.  That left just me, Harlie and Cooper for the rest of the weekend.  I had our night nurse on Friday night, which allowed me to go to an exercise class on Saturday morning.  And it was HARD!  Oh boy am I sore!

A few hours later Harlie signed that she was itchy.  So, I took those long q-tips that you see at doctor's offices and put it down her cast like I normally do.  But when I pulled it out it was wet.  Like yucky wet.  I got a new one and fished around a bit, and pulled out some pink-tinged pus.  Oh, great.  That is not a good sign!

So, I called the ortho surgeon on call at the hospital (in DC).  I have to share some of our conversation... I gave him the quickest, most concise history I could to bring him up to speed.  When it was his turn to speak, he said, "First, I have to ask you, you're very medically knowledgeable, are you a physician?"  HA! I said, "No, I just went to the school of hard knocks.  I've been really busy the past five years."  chuckle, chuckle.

Anyway, he said that the drainage could be from skin irritation (of the severe kind, if you ask me!) or from an infection in the surgical site.  If it was skin irritation, they could try to modify the cast again and give antibiotics.  If it was an infection, she'd have to go back into the OR for them to clean the site.  You don't want an infection in your spine!  And he said that they might need to cut a window in the back of her cast to see the site to tell the difference.

And if it was a skin irritation, it could wait till after the weekend.  If it was an infection, she could get very sick, very fast.  So, we couldn't wait to see the doc during the week.

He said that there was no way he could tell me how serious it was over the phone.  Which left a decision - go to our local ER and have their ortho surgeon on call take a look at her, or drive her up to DC's ER where he would see her.  

Considering Tom was out of town and going to DC would be quite the commitment and I would have no idea how long I would be gone, I chose to go to our local ER.  Some negatives with doing that:

No surgeon wants to mess with another surgeon's patient.  Especially post-op.  
No ortho doc wants to mess with another doc's cast.  

So, some doc came down and looked at her.  It's his opinion that it is a pressure sore, and not an infection in the surgical site.  And here's why:

She's lost weight.  You can really see it now - she's super skinny.  And he said that the swelling is down, she's lost weight and she's moving and wiggling around in the cast.  Plus, her cast is really breaking down in some areas.  It was his opinion that she needs a new cast.  Three more weeks is a long time when you've already got skin breakdown.  And she is definitely in pain.  

He called the doc in DC and they spoke and agreed to send us home with the plan that we would be seen by her surgeon on Wednesday (she's out of town till then, as luck would have it - ugh).  We thought about getting a white blood count, but he was pretty confident and didn't want to put her through the torture of a blood stick.   

He told me what to look for in the meantime:

A fever
Loss of appetite/food tolerance
Reduction in activity/lethargic behavior
Overall sickness/not being herself

Now that we're back home and it's Sunday, I'm feeling a little less panicky and worried.  But, I left feeling a little annoyed.  I know that what he says is true.  For most kids.  But in our case, we have experienced a major infection with none of those signs.  So, I'm not very comforted with his words of confidence in my "mom secret powers" to just know if there's something serious brewing.

Here's why:

This is the post when I spoke about finding her past infection.

This is the post that summarized how bad the infection really was.

Some things noteworthy (in my opinion):

She had a raging infection in her face - at the surgical site - post-op NINE weeks!
She did not have a fever.
She was eating like she always does - fighting every bite and throwing up as usual.
She was not acting lethargic.
The only time she was bothered was when you actually messed with her face or mouth.
In four days' time the infection almost killed her.

The doc yesterday gave me some material to try to make the cast more comfortable.  I told him that we have not been able to get the tape to stick to the cast.  She keeps sliding down in the chair and the tape inevitably rolls up.  So, he gave me some magic tape that wouldn't do that.  Yeah, right.  I'll believe it when I see it.

So, last night I washed her hair and washed her up the best I could.  And then I turned her over my lap so I could work on her cast.  It is a mess back there!  She cried the whole time, protesting my efforts.  I did the best I could.  But I don't see it making much of a difference.  After I was done she kept signing "hurt" which is a first.  She's never offered up that sign.  She kept wiggling around trying to find a comfortable spot, crying and signing "hurt."  Ugh.  It killed me!  So, I gave her a dose of Tylenol with codeine and within the hour she seemed better and finally fell asleep close to 10pm.

I will call the office in DC tomorrow and see what I can get done.  I'm going to argue for them to - at the very least - cut a window in the back of the cast.  That would put all questions to rest and would take the pressure off the sore.

By the time her surgeon can look at the cast and get her in the OR to get a new cast put on, we'll be at least two weeks from getting it off anyway.  So, I think she's going to have to make the call if that two weeks is worth it or not.  Maybe we could just put her in the brace.  I don't know.  I just know that she can't go three more weeks the way things are.  Something's gotta change.

So, I guess I'll know more tomorrow when I can get a hold of someone.


It is now Monday morning, and I left messages with everyone I could.  I'm not hopeful that I'll hear back today.  One complaint I have is that all the voice mails I get start off with "if this is an emergency, please call 911.  Or leave a message and your phone call will be returned in one to two business days".  What?  Certainly there are situations where calling 911 is not the answer - but waiting one to two business days isn't either.  Ridiculous.  I am really beginning to hate the orthopedic specialty.

I guess my other option is to just drive up there and go to the ER and then they would have to see us.  I don't know.

Anyway, just in case you were wondering - that magic tape?  Not magic.  Of course it didn't stick.  I find it hard to believe that they've ever used that tape and thought it worked.  I guess if you put it on your arm or leg where you're not laying on it all day, it would probably do better.

And - another note - she's really not tolerating her feeds very well.  She's throwing up during the feedings, which is very unusual for her now.  I hope that's just a coincidence.

Oh, and by the way - for all my local Richmonders - the pediatric ER at MCV is awesome!  It's brand new and completely renovated from the way it was.  You don't even have to walk outside - so if the area scares you in any way (which it's not scary at all) you don't have to worry about that.  You leave the parking lot elevator and walk right into the ER.  And each exam room is a ROOM - no curtained areas.  And it's big.  Lots of rooms.  Which translates into less waiting room waiting.  On Saturday there was no one in the waiting room and I got walked right back into a room and had docs in there in minutes - and it wasn't even a real emergency.

And need I mention that it's a pediatric ER?  The only one in the area, by the way?  Your kid is seen by pediatric doctors - who only deal in pediatrics.  Whereas if you go to another local hospital, your kid would wait with every adult, too, and be seen by the same doc that sees adults.

Oh, how different it would be for my family (and everyone who lives in this area) if we had a full-service children's hospital like every other city our size.  Yes, we are now the only city of our size that does NOT have a children's hospital.  So sad.  And embarrassing.  Think of the jobs!  Think of the houses that all those employees would have to buy and the shopping that they would have to do if they lived here!

I'll stop now.  It just makes me mad.

Okay, hopefully today will be productive.



kadiera said...

Recent experience (pulmonary, not ortho) suggests that while walking into *their* ER is a means when the ER pages a doctor to deal with it, you'll get the doctors you need, faster than calling.

I hope it's something as simple as a pressure sore, but even that will have to be dealt with before it gets out of hand. Thinking of you guys, and hoping for the best.

Susan said...

Yikes I don't know how I missed this. Reading ahead franticly to see what happened.