The Day After Surgery

 

Well, technically it's the second day after surgery as I am writing this, but you get the idea.

Butters' surgery went very well.  So well, in fact, that the whole electrode array was inserted!  We really were not anticipating this.  We were keeping our fingers crossed that at least half of the array could fit due to the Mondini's.  

Recovery was a little tough.  Okay, it was brutal.  All of the nurses and our anesthesiologist informed us during prep that the babies and toddlers (especially the boys) can get a little crazed afterwards.  They wake up dazed and confused and in pain.  It still did not prepare me for how upset Butters was.  And I am phrasing that mildly.  He managed to sock me in the eye as he was flailing his arms and screaming.  Payback, I suppose, for putting him into that situation.  They gave him a heavy pain killer that helped, along with a prescription to take home with us.  He slept off and on throughout the night, but still managed to get some good rest.

We were a little surprised yesterday when he wanted to crawl and cruise a little.  His bulky bandage has been wreaking havoc on his balance, and he is already trying to rip it off.  He is still not one hundred percent yet, with periods of fussiness, but he is getting a lot of rest which is the best way to get him back into the game as soon as possible!

And now, some of the things I have learned through this process that I would like to share with some of you out there who may either be considering this surgery for your child, or you have made the decision and you are already freaking out:

•      Make a list of questions/concerns that you have regarding the risks and possible complications and preferably have this list ready during the ENT consult AND at surgery prep to ask again.  I asked the same questions both during the consult and during the prep because I wanted to make sure that I knew what to do in case the worst possible scenario happened.  Our biggest concern was with CSF leaks due to Mondini's and our ENT constantly put our minds to rest since he deals with a lot of these cases.  But it still helped me to hear (over and over) how they resolve those issues and what to do if we ran into more leaks after surgery. As it turned out, Butters did have one leak and it was resolved just like our ENT told us it would be.
• Meet with the anesthesiologist.  I think she helped to put our minds at ease more than anyone else we met with.  They put tubes in to give Butters liquids throughout the surgery as well as putting tubes in to help him breathe, so he had  two red spots on his cheeks as a result of the tape holding the tubes in place.  She also explained how they administered the anesthesia, and made sure to tell us that he was not going to be aware of anything that was happening to him even with the feeding and breathing tubes.  She also did not want us to be present when she was about to administer anesthesia.  I think this is a good thing.  Don't make this any harder on yourself, but of course, this is a personal choice.
• You probably should not expect a Hallmark movie type reunion when you go in to see your child during recovery.  At least this was not the case with Butters.  Your nurses and anesthesiologist should warn you ahead of time, but just in case, I will tell you that they can be angry.  Angry at you, primarily.  They hurt, they are confused, they don't understand what is going on, they can't hear anything, and more importantly, the only way that they can express their emotions is by kicking and screaming.  
• If you can, have your discharge nurse give you some pain meds to take home with you, and I don't mean baby Tylenol, either.  This is major surgery that basic, over- the- counters cannot relieve, at least not during the one to three days after surgery. Plus, it helps them to get the needed sleep that they need for recovery.  Your  nurses should also give you explicit instructions for your meds and what to look for regarding warning signs after surgery.  Trust me, you will not remember one friggin' word of what they tell you during discharge.  You need to have it written down for you, especially regarding prescription instructions.

I had to keep reminding myself that as hard as it was to see my child upset as he was in the recovery room, it was temporary.  You have to keep thinking ahead, and you have to keep looking forward to activation day.  It is such a relief to have at least one ear behind us.  Each day, Butters' ear is healing a little more, and getting one step closer to hearing at his best!