Tuesday, July 21, 2009

Ugh

So we still have no real clue what is going on with Max. Idiopathic fevers? I think that is what one of the doctors initially said. Idiopathic... fancy scmancy for I have no fucking idea. They are growing cultures of the mysterio bacteria they found in Max's blood to try and find out what the heck it is and if that is the ultimate cause for the fevers (they also said if it's staf epidermsomething that some schmuck just contaminated the top of the blood vial, so we shall see.) They discovered blood in his urine today too. That was new.

So he's been poked, stuck, pressed, squeezed, prodded, xrayed, ultrasounded, EKG'd, folded, spindled and mutilated. He's had enough. Let's not forget that he is now seeming a lot SICKER since he arrived at the hospital that he was when he was just hot but playing and having fun at home. I'm just scared this will be one of those "the hospital made him worse" scenarios.

They gave him IV antibiotics today. He is supposed to get another dose tonight sometime too. The parade of doctors all are very friendly and nice, but they have no real information to share with us. The antibiotic must be a broad-spectrum let's cross our fingers and hope it works kind of deal. That's the impression I got.

Meanwhile, the food folks keep losing our menu selections and sending food trays with stuff like pot roast and a cup of tea and lasagna with squash. Hello? He's 2! He was really looking forward to that hamburger patty and tater tots. Or the tuna sandwich he was supposed to get for lunch today. All the kid has to look forward to is the excitement of food in bed (or another ride in a wheelchair to his next procedure). Please try and get it right people! And fruit! Don't forget the fruit!

He's just so pale and small. So sweet, trusting and cooperative too. He holds still and gives them his arm knowing they are probably going to hurt him. He asks in his tiny voice, "Please don't hurt me..." and when they do, he cries, "I need a bandaid!" with heartbreaking sobs. All I can do is hold him and tell him it's going to be ok. I feel like the biggest liar on the planet.

I've never felt this powerless in my life.

My heart goes out again to my friends (Beth/Jeff, Kim, and many others) who have spent so much time with their little ones in hospitals for various reasons. I feel fortunate that this is my first time walking in their shoes. I've been lucky to avoid this for over 8 years now.

I hear Tyler crying. Looks like he will be sleeping with me again tonight. That means no sleep for me. That kid is a blanket stealing Tasmanian devil in bed. I get kicked and smacked all night as he winds himself up in my sheet and quilt in the dead center of my bed, gradually menacing and crowding me off the edge. Then there are the times he just sits up and starts talking in his sleep. Or tries to sleepwalk out of the room entirely.

Off to bed. Wish me luck and continued healing vibes for Max.

7 comments:

Trish said...

Showing my support here too. Lots of love to all of you. Thank you for the updates. I can only imagine the stress. I'm so sorry. Maybe a sleep aid to help during crisis? :(
xxxxx

jennifer said...

Continued good thoughts coming your way for all four of you.

That angers me about the food. Why they send big people food to pediatrics is beyond me. I hope you're complaining to the nurses; they can make the dining people deliver real food stat.

Please take care of yourself, Becky.

Bridgett said...

I've been thinking of you guys almost continuously since I read your entry yesterday.

Can I just say...I HATE DOCTORS! Hospitals too. [Which is rather ironic since I'm an RN].

You're right when you say they often times make the situation so much worse.

You're also absolutely right about the word 'idiopathic.' It doesn't mean there is no cause for his fevers...it means the DOCTORS DON'T KNOW what's causing his fevers. I really believe there is no such thing as idiopathic anything.

Frustrating.

But please know I'm still sending positive, healing, vibes your way. I don't pray (as you probably know), but tonight is a new moon...so there is a lot of power from that to be gained.

Please keep us updated.

XOXO

Donna H said...

I will continue to keep Max in my prayers! I know that feeling of helplessness as we watch our children suffer. That never goes away even when they get to be 30...at least it hasn't for me.

Broad spectrum antibiotics are just that. They will cover most things until they can grow out the culture to make sure it is covered. It's better than waiting and doing nothing.

Is he at a children's hospital or at least seeing pediatric specialists?

In many hospitals, unless otherwise ordered, you can bring in his favorite foods if they aren't giving them what he likes.

Doctors saved my life more than once so unlike Bridgett this nurse doesn't hate doctors. Some are just better than others. Never be afraid to speak up though...they are not Gods nor are they perfect.

Big Hugs!
Donna H

Heather said...

I hate the word idiopathic. That's what they have labeled my cardiomyopathy.
I'm so sorry you guys are going through this. We're thinking of you all the time.

Chris said...

Poor Max. No kid should have to go through all of that.

Astaryth said...

I didn't get on the computer yesterday (Tues) and was disappointed when I saw in my Reader that the poor little guy was not only still in the hospital, but they still hadn't figured out what was wrong. It must be so frustrating.

Big hugs to the little guy and I continue to keep you all in my thoughts.