Why watch Boston Med when we can live it?

“I just came from the huddle with the Doctors and the anesthesiologist and they think that he won’t need to stay the night and you guys can go home when he wakes up.”

[blink…blink.  Karin and I exchange a knowing look and stare back at the pre-op nurse as she smiles politely]

“That’s good news right?  Do you have concerns about going home?”

Karin and I know better than to take the word of one nurse.  When you have to answer the same questions from 15 different people you quickly realize that no one talks to each other in a hospital.  Just because one person tells you something doesn’t make it true. “No there aren’t any concerns on our end.”  I told her “but I’ll believe that when we are in the car.”  She awkwardly laughed and we continued to prepare Liam for the O.R.

Read the rest of our day at the hospital with some blurry pictures from our phones after the break…

Its a bit of long story why we had to spend the last two mornings up in Boston but I’ll try to sum up okay?  One of Liam’s anti-seizure meds has only recently been approved for use in preventing what’s called infantile spasms.  As with any drug Sabril (or vigabitrin) has some nasty side effects, one of which is retinal damage when used for too long.  Because of this, the FDA when approving this drug has decided that there be only one pharmacy authorized to distribute Sabril and in order to receive the drug the pharmacy must have proof of many, many eye exams including an eye exam under anesthesia called an ERG.  These tests must be performed only by a Dr. authorized by the pharmacy and of course the closest one to us is in Boston.   Got all that?

yarrrrr where be the treasure?

Anyway, after about 6 months of scheduling and rescheduling this test we finally got it over with today.  Yesterday was sort of a dry run. The Pre-Op Appointment.  The dress rehearsal.  We packed up Liam and hit the road about 7am for our pre-op appointment.  Its fun.  You battle traffic for two hours only to spend another hour waiting in the waiting room before being brought into a room and asked a hundred questions about things that are printed in the chart.  I know they are printed in the chart because when anesthesia called us last week to review the chart they asked all of the same questions.  When your finished with the nurse in pre-op you wait until the anesthesiologist gets you into his office to ask you each and every one of the SAME FRIGGIN QUESTIONS YOU JUST ANSWERED FOR THE THIRD TIME.  Awesome.

So that was yesterday.  Today was the real deal and as I said we’ve been planning for this test for 6 months.  As late as yesterday we were told that Liam MUST remain in the hospital for 24 hours to be observed by anesthesia since he is on a ventilator.  He would recover in the ICU instead of the recovery room and we would be able to take him home on Saturday.  Not exactly happy about it we understand the hospital game and to avoid litigation they don’t want a case like Liam’s hitting the street only to have some sort of reaction.  So it was hard for us both to believe that we may get to go home so soon after the procedure even though we were sure that A.) Liam can handle his sedation (he always has) and that B.) We know more about his care than anyone, and would be better suited to aide in his recovery than a nurse who has never met him.

The procedure went well.  Mom went with him into the O.R. and stayed until he was out cold.  We hadn’t even finished our first of many coffees (waking at 5:30am is too early for me and I don’t like it) when the good doctor found us to report on how everything went.  She has to analyze some data and so what she told us today was only preliminary but it was pretty much what we expected to hear.   Liam’s eyesight is severely compromised due to Retinopothy of Prematurity which makes this whole process a bit strange.  His retinas are so damaged due to other reasons that even the eye Dr. herself told us she will probably be unable to distinguish any damage due to the drugs.   But she saw some good functional retina in there and wasn’t overly concerned.  Any sight at all is good enough for us at this point.  We did get a prescription for glasses to help Liam with near-sightedness though so I would expect that the internet will crash under the cuteness of the impending pictures of Liam with glasses and his little faux-hawk.  Back up your data folks, you’ve been warned.

The post-op nurse was great and quickly set our mind at ease that we would be packing him into the car really soon.  Kid was still dressed!  They didn’t need to put a johnny on him since the process was non-invasive.  The sedation was simply to keep him from moving while they examine the eye. Which is why we were so confused that we had to stay overnight anyway.  We are well aware that there are risks involved anytime you go under anesthesia and the hospital needs to cover its ass from being sued but the initial plan seemed overly cautious.  We were relieved when Lisa said right off the bat that she knew we would know what he needs best, not every nurse gets that (its usually the ones with kids of their own).

Can we talk about this kid of mine for a second?   Toughest person I have ever met.  A trooper of the highest rank.  This son of mine is a warrior.  Chuck Norris cries at the idea of facing Liam in a toughness competition.  I am in awe of him.

He woke up quickly after, and though understandably groggy he was alert and back to baseline on all settings and vital signs.  Lisa the nurse gave us the quick go ahead, so we changed his diaper and were out of the recovery room less than an hour after we entered it. Karin drove home and we sang along to the ipod (Weezer, Ben Folds, Regina Spektor) at the top of our lungs while Liam napped in the back seat.  We have been elated and relaxed ever since.  We were supposed to spend this 24 hour period watching cable and reading in an ICU room.  Found time together as a family but now we get to do it at home!  After we unpacked Liam and got all his equipment squared away I sent Karin upstairs for some sleep since neither of us have slept in the last couple of nights.  I watched Coraline on HBO while Liam finished sleeping it off next to me on the couch.  Karin came down after a few hours and we switched so I could get a bunch of sleep too.  Most restful nap I’ve had in some time.

We spent the evening watching TV and talking and I wrote this blog post.  Liam spent some time doing excercises in his stander and playing with the two of us before we treated ourselves to some pizza.

A long day, but in total a day that can be marked as a total win.  Its midnight now and Liam is back to sleep.  Karin as snoozing upstairs and I am setting up a Futurama marathon on the netflix to fall asleep to on the couch.  Good night all.

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