Thursday, June 23, 2011

Big Words, Bigger Worries

I learned a new word:  Intussusception - yeah, say THAT five times real fast.  It is the diagnosis my son received after a day of gripping his stomach and screaming for about 2 minutes every half hour or so.  It was the first for me, something medical I had been faced with that I didn't understand, nor have time to research!  I understand cold, virus, strep, ear infection, fever and stubbed toe.  I don't understand small intestine "going in on itself."  I don't understand how they are going to fix this?  And I certainly don't understand why it has to hurt so much.  Luckily Cameron was given a little bit of morphine to help take the edge off.  The Children's ER at Fairview was wonderful - - - but the Cleveland Clinic is the best place to treat Cameron, so off we go via ambulance.  He was so brave, and I was so scared.  They get him in the rolling transport chair and they hook him up to monitors - the screen is at the foot of the bed facing Cam.  Once they turn the screen on my hopped up little boys makes us all laugh exclaiming "Mommy, look at all these volcanos!"

When we arrive at the Cleveland Clinic - main campus, and we are sent to a room right away.  It's big and clean, and the window blinds are amazing!  It's like you are swimming under the sea with Nemo.  Neither of us care, because he's still having pain and we are both very, very tired.  I cuddle in bed with him until someone comes in to tell us the radiologist has arrived, so now he'll be having an ultrasound, and xray and a "procedure."
The procedure isn't fun.  Actually, it was terrible.  They do not sedate the child at all, nor strap him down.  He lies under a huge xray machine, they insert a tube into his rectum, tape his little butt closed and inject him with forced air air.  His cries and face told me this was painful, and scary.  But I couldn't let my little boy be alone in a room full of strangers as this unpleasant experience happened.  So I kept talking to him, trying to calm him while I cried, and pretended to be strong.  They took a few more xrays and tell me "Mom, we got it."  I'm relieved, and I hug Cammy tell him it's all over.  I get him to calm down and maybe think he might trust me again.  They take him for another ultrasound.  The tech looks at me, square in the eye. 
Damn. It.
It's not cleared.

So off we go back to the xray room.  Cameron is asleep now, they try to prep him without waking him which works until they insert the tube again.  Immediately he's terrified and we are both crying.  This time they shoot barium in instead of air.  Again, painful.  This time he's manic and he sits up and hits his head on the xray machine above him, which ended up causing a slight bruise.  He was pitiful.  Again I hear "We got it Mom."  - Although, this time I'm skeptical.  He still crying that he hurts, but with the mixture of barium and air - he bound to have pain.  We go back to the room and try to sleep.  We get another ultrasound in the morning and the Dr tells us, it's all clear, he even used the phrase "Cured without surgery. Outstanding!" Cameron tries to eat, and he still has belly pain.  They take him for another xray and ultrasound.  The Doctors can't agree.  The results are conflicting.  The xray shows the Intussusception is back, but the ultrasound says it isn't.  So now everyone agrees that in order to figure this out, we are going to get a C-T scan of Cameron. For this they insert another tube to drain the barium that is still trapped in there.  To me, I instantly notice he's starting to feel better.  No complaining of pain and he's telling me he is hungry.  In order to prepare for the test they have him drink contrast over the course of an hour, it tastes like Fruit Punch, so he does it.  I'm not sure what happened but they either forgot about us, or were running very late and picked us up for the CT scan over an hour and a half later than they said we were supposed to have it.  I should have known then that this was going to suck...
We get in the catscan room which is cold and dark and we tell Cameron he's going to ride through the doughnut.  He's ok with that.  Then they roll him over to insert more contrast through his bottom.  It wasn't forced so it wasn't extremely painful, but he wasn't happy.  They get him all situated and go to flush his IV before injecting him with the dye through it, and boom.  Nothing.  They can't get the plunger to move.  His IV has just decided to stop working.  What does this mean for my poor, exhausted son?  Another IV.  I ask why we can't sedate him?  Basically I'm ignored.  They call our nurse down and I tell her, we are not fishing around, we will poke and move on right?  She tells me she isn't that sure, and we should call transport in, because they are "really good' at this.  I suspect she is right because they do it in moving vehicles to all sorts of people, all the time.  The transport team comes in and YA, it's the same group that brought us to the Cleveland Clinic from Fairview.  The next  hour SUCKS.  They try so hard to get the IV started but Cameron's reaction is to twist away, so even if they caught the vein it pulls out and blows.  After the 4th attempt, I say that is enough and we are done.  Do the catscan without it, or we go back upstairs to bed until tomorrow (even though it is technically tomorrow already.)  The Surgeons say NO, no radiation for him, unless we have the injected dye.  I tell them OK, we are done.  This is where it gets even worse.  One of the surgical guys comes in and tells me he just wants to look at Cameron's arm.  He looks at me and tells me he can do it.  I tell him NO, we are done.  this is is depleted, I'm exhausted and we are done.  He tells me "I understand mom, I'm a Father.  I have a son who is not much older, i promise I will not stick him if I can't get it."  I told him he was a moron if he thought he could make that promise.  He kept saying "I'm a Dad first.  Before a surgeon, I am a Dad."  Against my better judgement, I say fine - one last try.  Cameron is in absolute hysterics but I'm terrified my son has a tumor or something else causing this pain...but wait "You guys all realize the only pain he's been in has been from the IV's right?"  The nurse is looking at me.  I think she is trying to get me to say "Stop" - but I didn't.  I should have.  The Dr who keeps promising me that he won't stick if he cant get it asks the nurse to open the IV package, he picks it up and says "how do you do this?"  I screamed "Really?  Really? What the fuck!?" he looked me square in the eye, and looked down and stuck Cameron.  He did get it, he did hit the vein.  but just that blew.  Mother fudge...
The Dr. said "I have another plan." 
That was all it took and I BLEW UP.  I had asked for sedation, why wasn't there any numbing cream - this is a children's hospital.  He is 3 bleeping years old, have we all bleeping forgotten that?  I picked him up, I kissed him and he clung to my neck and I told him "We are going to bed now. no more pokes." Dr. Idiot is trying to follow me to talk to me, but i won't have it. I looked at him and said that I truly believe that car makers should know how to drive a car. I realize he knows all about the body - things I never will, but he didn't care about my "car" he was too busy being egotistical, manipulating me, and didn't even understand the IV kit!?  I told him he was fired, of my kid's case and not to come near us.  I put Cameron in  the wheelchair and walked us out.  I just kept saying we were DONE and that I would be transferring to Rainbows the next day.
I get Cameron all situated in his bed.  I'm getting my shoes off, ready to rest myself and then 2 beautiful pediatric Doctors come in.  They are young, and hip and sweet as can be.  But, I ask them to leave.  One of them tell me she is just looking, and I tell her that is fine, she can look for tomorrow because we are sleeping tonight.  I told him "no more pokes" and I meant it.  During this time our nurse comes in and sprays two puffs in his nose.  I ask her what that was and she tells me it was something that will sedate him, help him to relax.  I said he was relaxed, he was asleep!  I really thought I should have been asked first.  I turn around and one of the Dr.'s is singing "Itsy Bity Spider" to him.  He's already acting strange like he is drunk, real slow, no fight in him at all.  She says "it worked quickly because he is so tired."  At this point my mind is mush.  I move a few things off the couch so I can sit down and hear Cameron yelling some, I rush to him because I notice in that same moment they are going to try for an IV!  They do!  They miss!  I see Dr. Jackass outside the bedroom door. THAT was it!
I had a meltdown and screamed like I have NEVER screamed before.  I cursed everyone within earshot.  I muscled BOTH lady Doctors out the door and stood my ass against it.  How they could do that after I explicitly said "NO" is beyond me.  I crawled in bed with my sad, sleep, hallucinating kid and I watched him sleep.  The nursing assistant came in to take his vitals and poor thing, just trying to do her job was nearly trounced by me.  I said No vitals tonight other than his pulse ox, this child is going to sleep now.  I stayed up to watch him as the medicine wore off then I crawled next to him passing out myself.  At 4 Am our nurse walks in to ask me if anyone has come to talk to me.
"No.  Why do you ask?"
Apparently Dr. Jackass ordered another barium enema, and they had a radiologist coming in right now to do it.  I told her I was refusing, and especially refusing since Dr. Shit-for-brains orderd it.  He's DONE and I don't understand why the hell nobody in this place seems to understand or respect that.  It was Cricket's birthday - My emotions were running high, and I was being rude and unreasonable but I didn't care.  Cameron was going to be the priority.
The next morning Cameron is hungry and obnoxious.  I'm telling you, this kid was BETTER!  2 days ago I couldn't get him to push down a row of stacked dominoes with 1 finger.  They were going to take Cameron for one more ultrasound, which i was willing to allow, but as we got to the door, the head surgeon said "No.  No more tests right now."  He had the best analogy - he said "It's like taking a picture of a tiger.  I show you do you see the tiger?  No?  And someone else says that is a white tiger, while other will argue they see orange - then they will try to convince you it wasn't a tiger after all."  He wants Cam to eat and drink.  Cameron did great, no pain, mean as ever - and we were able to go home! When I went to get a bite to eat they did have an Ombudsman come talk to our room to discuss the isues we had - I'm sure they realized they crossed a few too many lines last night. 
At any rate we got to go home and celebrate our healthy boy and his little sister's 2nd birthday.

Goodbye Cleveland Clinic!!!

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