Broken Heart

Sebastian has a heart murmur.  If you have read my earlier blogs, you know all about this. On Wednesday, we had an appointment for an echo cardiogram.  This is essentially an ultrasound of the heart.  His new pediatrician thought the sound of the murmur was a bit different than most of the normal "innocent" murmurs, so he wanted to get a better look at it. 
Knowing Sebastian like I do, I opted for sedation during the procedure.  I wasn't sure what that would consist of, and pretty much thought it would likely be an I.V.  But the other option, of going in cold, wasn't going to get us anywhere.  I knew he would fight it, we wouldn't get any results, and he would be traumatized for the next time we tried it. So, sedation, whatever the method, was the only way to go.

Geoff had to work that day, and since he is new, and the vacation booking procedure there is wacky, he couldn't get time off.  I asked my mom to come and help- most medical procedures with Bastian are a 2 man job.  As it is, I am so glad she came. 
We headed to the hospital for 8:30, straight down to the paeds wing, where they were planning on sedating him.  We got really lucky, and had a very nice nurse named Michelle.  She got us in our room (there were no other kids, which was nice), weighed and measured Sebastian.  When she tried to do his blood pressure and blood oxygen, he got agitated, so she decided that she could do it later.  I love people like that- that use common sense. 
She asked Sebastian if he liked movies, and of course, he does.  He said he liked Finding Nemo, so they found a VHS copy, and wheeled in a TV and VCR for him to watch.  He was thrilled!  While he was watching, she brought in his sedation.  Thank the Lord, it was just liquid!  This kid can do liquid medication in his sleep.  She was nervous that he wouldn't take it, because apparently it tastes awful.  My mom said when they give it to adults, they tell them to take it like a shot, because the taste is so strong.  But my super trooper kid downed it no problem.  :)

She gave him 45 minutes to fall asleep.  That would take us to 9:30, which is when his appointment was scheduled for. If he wasn't asleep by then, she would bring in another half dose, and that should hopefully do the trick.

So, after 45 minutes of Sebastian flipping up and down and all over on the bed, getting up, getting down, talking, dozing, and then walking himself back up again, she did need to come in and give him a second dose.  He fell asleep about 10 minutes after that dose.  I notified the nurse, and she let the doctor know that we were good to go. 
I had to go up and register him, and my mom stayed with him, as they moved him to ultrasound.  I caught up with them a few minutes later, and we got settled in our ultrasound room. 

The paeds nurse was there, and was trying to talk the ultrasound tech into trying to do the ultrasound with Sebastian sleeping on his side.  He is a side sleeper, usually curled up into a little ball, as tight as he can get.  Unfortunately, for this test, he needs to be flat on his back, with his shirt wide open.  We tried to flip him a couple of times, and finally, I got him over, and resting. Still asleep...phew.  Only problem was the doctor wasn't there yet, and nothing started until he was. 

We waited about 15 minutes for him, before he finally came in.  I was starting to get really nervous.  Sebastian had received his sedation dose about an hour and a half earlier, and I knew it wouldn't last forever.  I needed this kid to sleep.  As soon as the doctor came in, the tech started attaching electrodes and getting the ultrasound ready.  She sensed my urgency, and worked as quickly as she could.

Sebastian laid on his back for about 7 or 8 minutes, and then tried to curl up on his side again.  Every time, I would try and flip him back onto his back.  He would last a minute or 2, and then curl up again.  Then he started opening his eyes.  Just for a minute or 2.  But I knew- our window of opportunity was coming to a close.  I eventually moved to the other side of the gurney, to try and work on getting him to lay down from that angle.

The doctor was very thorough.  But the whole procedure was exceedingly slow.  Or at least it felt that way to me.  But I couldn't stop myself from watching his heart on the ultrasound monitor.  I thought to myself  "This is what keeps my son alive.  And something is wrong with it."
 I watched as intently as I could, not knowing what it was specifically that I was seeing, but trying to see what was wrong.  Every time they showed the valves of his heart, I held my breath a little, until I could see them working.

When they tried to get a lower angle on his heart, to come up under his rib cage, that was when he had finally had enough.  He pushed the tech away, and flipped to his stomach.  He started to truly wake up, and searched me out. 

"No more Mommy, no more." 
I grabbed his arms, hard enough to leave bruises, and tried to keep my face and voice soft. 
"Mommy and Grammie are here, buddy, but you have to let them finish."
Push, pull, lift, tug.
"Mommy, get off me, get off me!"
Under his arms, flip him over.  Telling my mom to grab  his legs.  No, don't grab them, lay on them.  Hold him down. Praying for the doctor to finish up, as they back off and watch this unfold.  They can't work on him like this, and I can't control him.  He is drugged and confused and oh so strong. 
I want to stop, and give up.. 

A new nurse comes in, this is the one who is going to do the EKG that the doctor just ordered.  She looks at the scenario, my mom laying on his lower half, me, sweaty and disheveled, holding his upper body down.  She looks at the doctor and shakes her head.  She can't do it.  The doctor tells her to try, to not make this fight be for nothing. 

I managed, at this point, to get a decent hold on him.  I am looming above his head.  I have my hands locked around his biceps, and I use my forearms to hold his shoulders down.  I use my own head, to push his back into the mattress.  I can't even lift my eyes to see what is happening.  I can see stickers and clamps being attached to his chest and stomach, and his hands are moving constantly, pulling, searching, ripping.  She gets them all attached and scrambles to run the test, even for a second.  A second is all she gets, and Sebastian has 2 of the clamps in his hand.  No one knows if the test has worked, but it was the only shot we got.  She pulled the clamps off, and leaves the stickers.  And then she leaves. 

Sebastian makes everyone laugh for a second, when he yells "I don't want to play anymore." 
So like him to think we are trying to play.  That this is just another stupid game that mommy wants me to try, that I don't get and don't like. 

The Doctor looks at me and tells me he needs 5 minutes.  5 more minutes and he can get the last 2 views he needs.  I look at my mom, who nods and starts to hold his legs down again.  I get a grip, one last time.  His back bows up, and he fights.  I am sweaty and his skin is slick, and so hard to hold.  I find a good grip and get him locked down.  I look at the doctor, who isn't moving.  Why isn't he jumping on this?  Why isn't he doing anything?  I realize they want him calm.  It's an impossible request at this point. 

Sebastian is emitting a high pitch squeal- it's not a cry or a scream even, just an animal noise of distress. I grab the loops in his jeans, and now have him locked in.  I put my forehead on his and start talking.  I tell him to breathe, deep breaths.  In and out.  I blow my breath in his face.  For a second, he stops.  He relaxes.  Only for a second.  But that's all I need.  I know what to do now.  In and out, buddy.  Deep breaths.  In.......Out.......blow. 
In.
Out.

In.
Out.

Slowly, he calms.  He stops crying.  His eyes droop.

As soon as this happens, the tech and the doctor jump.  They see the window.  They are going to use it. 

Soon enough, they are done.  Sebastian doesn't exactly sleep though it, but he does well enough.  When it's done, they let him pull the stickers off his body.  Ever polite, he mumbles "Thank you, doctor" as we are wheeled out of the room.  I make eye contact with everyone, and thank them for their patience.  They thank me back.

Back in the room, Sebastian falls almost instantly asleep, deeply and peacefully.  Michelle, our nurse, takes his blood pressure, which is normal and fine, considering the fight he just put up.  My mom and I, both exhausted, rest.  We wait for the doctor to tell us what they saw.  I share with my mom that I heard the ultrasound tech say "aneurysm."  She confides that she was amazed at how strong Sebastian is, and that she had no idea that it could be like that.   And Sebastian sleeps on.

After about 40 minutes, the doctor comes in and give me the verdict.  Mitral valve prolapse.  Basically, he has a leaky heart.  The valve on the left side of his heart lets some blood back though, even though it is only supposed to flow one way. 

He draws me a picture, literally, to show me what it is.  There are no restrictions, no medications.  We will have to see a pediatric heart specialist at McMaster to help monitor it, but other than that, we can go home. 

My mother seems relieved.  Says this is very common, she sees many people with this diagnosis.  We let Sebastian sleep another 10 minutes or so, and then wake him up.  He acts like he's drunk, can't stand or walk well, so he gets to ride a wheelchair out.   We run into Aunt Laurie on the way out, who is sympathetic to the poor boy.

We drop grammie at home, then head home ourselves.  Sawyer stays with Papa, so that we can rest.  On the way home, Sebastian suddenly exclaims that he can't see.  I immediately jump to worse possible scenario and assume the sedation has stricken him blind (similar to soap poisoning in "A Christmas Story").  What he means however, is that he doesn't have his glasses. This made me laugh right out loud, mostly at myself.
I realize they got left in Grammie's purse.  Once we are home, I call and let them know to drop them off, if they are out and about. 

I get Drunky Drunkerton up to my room, and into his pyjamas and bed.  He is sleepy, but goofy too.  My dad makes it over in record time, and comes up to visit.  I know it is hard for my dad to see Sebastian like that, out of sorts and not himself.  The real hardship came when my dad said he was going to go, and Sebastian said,
"Don't go, Papa.  Stay.  You are my friend."

My dad blubbered his way out the door.  :)

So now, things are back to normal.  Our new normal.  Where I know my son's heart is a little bit broken. 

Mine is too.  A little.  But we will deal and heal together.  Like always.

Rosie N. Grey
The N stands for "never ends."