Thursday, February 27, 2014

Waiting and Praying

Isaiah woke up this morning all kinds of cheery.  

Look at that smile! We were scheduled to arrive at DuPont at 11:30 so he was able to do his normal morning routine (minus the bottles).  

At 9:30, we were on our way.

Funny, when you spend 2 months in the NICU, you know exactly where to go...we checked in and waited by the windows to sign papers so that we could wait in the pre-op waiting room.

Isaiah took no notice that we were in the hospital.  I loathe the day he knows what's going on in regards to all of this.

Before we knew it, it was time to go back to pre-op.  You aren't supposed to take pictures.....but I heard other parents doing it so I just focused the camera on Isaiah (Dave's nose too).

You didn't see it there until I pointed it out, did you?

Anyways, we waited and waited and waited....

and found ways to entertain ourselves.

Once the doctors and the anesthesiologist came to visit, we moved Isaiah to the bed and got him ready.

We prepped everyone reminding them of how fragile he is, we showed them how you can put rolls under his mattress to change his position, and we begged them to be careful.

The doctors prepped us, had us sign consent forms, reminded us of what could go wrong, and told us of alternatives if certain things didn't work out.

Isaiah is getting a port put in.  His doctor didn't seem 100% confident that he'd have enough room by his neck to get in (I don't quite know all the terminology....I'd probably pass out if I knew what they were doing), and mentioned the width of the tubes may not be wide enough in the port, and that a Broviac might be better.

I should explain a bit...while Dave and I wait and wait and wait....Isaiah is getting a port today to make his Pam treatments easier.  He normally gets an IV, which last time took 3 sticks.  It's difficult to get an IV in without a tourniquet.   It's traumatizing.  The port, which will be placed in his upper chest, will make it less traumatic.  It's under the skin so he can go about his daily business.

A broviac is an access that hangs outside of the body.  It requires a lot of maintenance and limits certain things.  For example, it can't go under water.

We are just getting to weening Isaiah off of the C-Pap. If he is off of his machine, he'll get cleared for water therapy.  If he has a broviac? Still no water therapy.




Yes, he's grown stronger than anyone predicted...but imagine how strong he'd be if he would have been getting water therapy once or so a week?  Not going to happen.  Port or nothing.

Anyway, putting a broviac in is less invasive and a less risky surgery.  The doctor may, and likely will, break a bone putting the port in.

Its worth the risk.  Bones heal.

When he heard "port or nothing" come out of my mouth, he decided it'd be good to call Isaiah's favorite doctor.  I assume he thought that he'd have an ally.

Nope!  He was on our team.  The comical moment of the day is when we heard the conversation went like this...

"If we do this, it could break his collar bone."
"If you get it in, I can treat that broken bone.  With that port."


Placing the port should take about an hour and a half.  After that, he is going to get his ears cleaned out, and if he has fluid, he'll have tubes put in.  After that, he'll have an ABR done, which is a 2 hour test to check his hearing through brain activity.

So here we are, waiting waiting waiting.  I can't stop staring at this last picture that I snapped of Isaiah, sleeping peacefully before I gave him his kiss before surgery.  

We'll update as soon as we hear anything....but know they are talking that recovery will likely be in the PICU as a precaution.  Ugh. Hopefully Isaiah will surprise everyone and he'll get to stay on the floor with all the other kiddos recovering from surgery.

Prayers, please. <3

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