Tuesday, March 30, 2010

On the other side! (Again!)

We got a call from the OR after about two hours letting us know that the neurosurgeon was starting his part of the surgery.  My heart fell.  After two hours they were just starting the main part of the surgery?  Turns out, they had some trouble getting him to sleep, (turns out he probably metabolizes anesthesia like I do because he ended us needed double the amount that a kid his size would usually need,) some trouble starting his lines, (again taking after mom, poor kid,) and they had to get the ear tubes placed.

And as a side note, can I just say "Hallelujah!" for ear tubes?  When the surgeon placed them, he told us that Max had fluid building up in his ears again, so it was looking like we were heading for another ear infection. 

It took the neurosurgeon another hour to finish removing his skull plates.  When he came back to the waiting room to talk with us, he told us that Max had significant scar tissue and it was "a little more difficult than usual."  Yeah.  What else is new?

I was incredibly antsy and restless at this point- I spent the next few hours pacing the halls of the hospital, running little errands, calling Serene, (who knew just how to distract me!) and probably making everyone around me crazy.  After lunch, I was so grateful to meet up with our surgeon in the hallway and hear that things were finished after more than six very long hours. 

The doctor said that everything went as well as he could have hoped.  Max stayed stable throughout the surgery, he received about a unit and a half of blood, and had quite a bit of scar tissue that he had to work around.  He removed the plates and screws from the first surgery and replaced them with different plates and screws that should dissolve within nine months.  The doctor said he was very pleased with Max's new head shape and felt that he was able to achieve the correction that he wanted.

The interesting part was that the doctor said that he saw some evidences of increased intercranial pressure as he was operating.  Hearing that confirmed to both of us that we had made the right decision to pursue a second surgery.

They brought him back to the PICU intubated because of the heavy amount of anesthesia they had to use.   This added a whole new intimidating mess of tubes, wires and machines to my poor boy.  They told us they would extubate him as soon as he woke up so that they could make sure he could breathe on his own.  We kept expecting it would happen right away, but we were in for a lot more waiting. 

And waiting.

And waiting.

They finally extubated him a few minutes ago when he started stirring and getting visibly upset.  They knew it was time when he started trying to pull it out on his own.  It was really hard to watch, but he looks so much better and more peaceful now. 

His sodium levels, which are a huge concern because of our previous bout with SIADH, are in the low/normal range.  We have to be at 135 to get discharged to the regular floor, and he's at 134.  I'm really hoping they come back up, because I would love to get out of the PICU.  Fortunately, we have a much better set up this time.  There's a small pull-out sofa, a bathroom to ourselves, a closet where I can put my suitcase so I don't end up getting robbed again, a slushie machine down the hall, and much more space.  That, at least, makes me feel a bit less crazy.

They told me I can try to nurse him as soon as he's awake and looks like he's ready for it.  He's in a big bed this time around, so I'll probably just climb up next to him.  I'm going to hang here for another hour or two to see if he'll wake up, because I don't want to miss the opportunity to feed him.  If he doesn't stir, I'll head to the pumping room (where I ineveitably feel like moo-ing!) and then off to my tiny, glorified closet they call a sleep room.

Check that.  Max is now officially fluid restricted due to his dropping sodium levels.  Sigh.  They're not officially calling it SAIDH, but they are working to get on top of it before it gets too crazy.

So now for the pictures.  If you're squeamish, you may want to skip them.   They're not gory or bloody, but they're a little sad, especially if you haven't ever seen this before. 
Playing in the bath the night before surgery.  I was loving playing with his curls for the last time.

"Before" shots- this triangular shape is called triganocephaly- the exact thing we set out to fix.

Hanging in the waiting room, sporting the shiner from last night's fall from the bed.
Rocking the baby scrubs.
Happy as can be after a serious dose of Versed.
Just out of the O.R.
Extubated and very sleepy.  The swelling is starting to kick in.


  1. Aw, what a sweetheart! I'm glad the surgery is over, and I hope the recovery goes as well as possible.

  2. He looks really good! Looking at the after pictures, its hard to believe he just had such an extensive surgery! I hope the sodium levels get to normal quickly so he can have some mama milk. You'll stay in my thoughts and prayers.

  3. Oh, Stacy! I'm looking at those pictures of Max- and they're making me cry like a baby! I'm so sorry you have to go through this again. My prayers have been with you all day, and I'll continue to pray for you guys. I hope he can get out of the PICU soon!!!

  4. Many prayers will be headed your way - what a precious Angel Baby you have~

    Thank you for taking your what-could-be-sleeping moments and letting us know how it all went...

    My heart is with you - I spent too many nights with my 3-week-old baby wired and tubed at Primary Children's with not a hint as to what would be coming down the Pike, so I understand how you feel.

  5. That must be so hard to sit around and wait. He looks so cute, even knocked out cold! :)

    Best of luck during the recovery.

  6. I'm so sorry that you guys had to do this again! I'm praying for little Max that he heals fast and that his sodium levels pick up REALLY SOON so you guys can get to a normal room and hopefully home real soon!

  7. I'm so glad you got the confirmation this was necessary. That must be a huge weight off your shoulders.

    Poor Max, and poor Stacy! I wish I could make everything all better.

    I hope everything goes as well as possible from here on out. Go sodium, go!!

  8. Many prayers your way! I hope it all goes up from here.

  9. Stacy - he looks so little in that big bed. It's just deja vu isn't it? Poor thing. I am praying for a faster recovery this time. I wanted to come see you guys but I have a cold so I'm going to stay far away. Please know I am thinking of you.

  10. What a little sweetie. Those bath pictures are great. Thanks so much for keeping us updated. I'll be praying everything levels out today and that he has the strength he needs to make a quick recovery.
    Hugs to you parents too!

  11. Oh my, what a flood of memories those pictures brought back.

    I am SO glad you called me! It was quite fun to talk to you. You are more than welcome to call, anytime. (sorry about all the screaming kids though)

    I'm glad that he got his tubes and that the surgeon sounded confident that things went well.

    I'll pray that you guys get out of the PICU ASAP!

    Thanks for the update.

  12. I am so glad things went well!! He is so stinkin' cute, before and after! Keep on keepin' on! And call me if you need anything I'm close :)

  13. Good luck! I hope all his numbers go the right direction quickly!!

  14. I am so glad it's over! He looks great for just being out from this kind of surgery!. Hang in there. I am constantly thinking of you. My little one was operated on yesterday as well for metopic. She's doing really well already. Max will do great as well!! Keep us updated...


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