Apr 8, 2011

Muscle biopsy day

Morning came waaay too early.  Manny was his happy self as I got him up early, threw him in the car (while it was still pitch black) and headed to the hospital. 

We got an amazing parking spot.  (I am thankful for these little things as it's not easy to park my 15 passenger van ... like it won't fit in the parking structure so I am limited to side parking only.) 

We were the morning entertainment for the staff and those there for surgery.  He was crashing his cars again.  The "oh man" really made people giggle.  Then at one point I said, "You are silly."  To which he said to me, "YOU silly".  And the registration lady lost it she was laughing so hard. 

 Eventually it was time to go back to pre-op and entertain a whole new group of people.  This wasn't the children's hospital ... it was the day surgery floor ... so it is a mix of kids and grown ups in the same corridor.  The rooms were TINY and had no doors or curtains so we were all facing each other.  There is NO privacy in these places.  I know waaay too much about these strangers and they know waaaay too much about us! LOL

Then it came time to give him some "happy juice" (aka versed).  It goes straight into his jtube so it works FAST.  And in just a few minutes, he was cracking us all up blinking and staring.  It was like he noticed something was "off" and was trying to blink it out! LOL All the nurses were calling each other over to come see the funny baby. 

I bought a new dvd player the other day and I'm so thankful I brought it today.  He got VERY mellow and just wanted to chill so I put on some Baby Einstein and we sat peacefully.  For almost 2 hours!  There was a delay with the surgeon prior to us.  Then there was a mixup with the anesthesiologist.  (They couldn't find the records for his previous surgeries and what was used.)  They were being very thorough ... which we appreciate, since he is a very high sedation risk. 

Then it was the most difficult part for me ... the moment they take him away from me.  I have had this moment with SEVERAL of my kids SEVERAL times and I can say it never gets easier. 

I go situate myself in the waiting room.  They called a few times with questions but it was fairly uneventful.  (I like it that way.) 

Surgeon says it all went well and the muscle was already on it's way to pathology.  We might have a preliminary report as soon as 1-2 weeks he said. 

"Before" ... look at those chunka-chunka thighs!  Aren't they awesome?

The stitches are supposed to stay put under the tegaderm (clear tape, above) and then be taken out in just over a week. 

He had a hard time coming out of sedation today ... he was screaming and not himself at all.  That lasted several hours but then his real self just clicked in and he was back to happy baby.  He started complaining of pain and trying to pull off the bandage so I gave him Tylenol with Codeine.  Took the edge off.  And then I covered his bandage (out of sight out of mind). 

I'm still having a hard time with the fact that I did this to him.  I HATE having to decide stuff like this.  I never know if I'm making the right call.  When he's in pain post surgery from something that is life saving (like switching him to a gtube or something like that), I can justify it.  This?  I'm just hoping it will somehow be "worth it".  (Whatever that means.) 

The whole way there I was praying.  Not exactly sure WHAT to pray.  Protection.  Pain free.  No complications.  Those are a given of course.  But what to pray about the outcome?? 

I don't want them to find anything because I don't want there to be anything wrong with him.  But the truth is... something IS wrong with him and I'd love to know what it is and how to fix it.  But what if it's another "fatal" disease?  And the rollercoaster ride starts again?  God has seen us through this far so I know we're in good hands.  But ... what to ask for?  So I asked Him for peace. 

And that He granted. 

Tonight, Manny sits in his high chair playing quietly.  Happily. 

Life is great. 


  1. His thighs are MOST Excellent. Let's call him Your Royal Thighness, shall we? :D

    Peace is a perfect prayer. And with that, I will add mine to yours.

    Love to you and yours ...

  2. You are so right on about what you wrote. I was nodding my head in agreement. The van and parkin issue, lol. It doesnt ever get easier and it is hard knowing we are the ones making the decision to put our child in pain or under.

    I pray you for quick n accurate results.

    be blessed friend