the homecoming

I apologize for the lack of updates since Cale's surgery.  We have had a tremendous outpouring of help and support and I'm feeling a tad bit guilty for not keeping everyone up to speed with Cale's progress.  Alas, here is what's happening with the Burkhalter family.

Cale's surgery last Thursday was a success.  I felt much better afterwards knowing that the doctor didn't hesitate for one second in telling us we did the right thing.  Even so, seeing my boy in so much pain and seeing his little tummy forever changed by an impressive scar and foreign tube, I felt the wind quickly leave my sails.

Which is probably why the next few days left me so dejected.

Late Friday morning we hit our first major speed bump.  After chatting with several visitors who had come through to see Cale, he attempted to test out his feet and stand up in bed.  Upon doing so I noticed something leaking from underneath his gown.  Hmmm.  That can't be good.  My mother-in-law lifted his gown and the tube that was previously anchored into his stomach was now dangling towards his knees.  Not yet panicked, I stepped outside into the hall and notified his nurse as to what just happened.  He stared at me for a few seconds and then quickly jumped into action.  I didn't initially know what this all meant.  I didn't know enough to be panicked or to even be concerned, but as soon as the parade of nurses and doctors hurriedly rushed around trying to think of the best way to go about fixing this situation, I knew that whatever had just happened wasn't an easy fix.  I hopped into Cale's bed and cradled his head in my lap.  I ran my fingers through his hair and told him not to be scared; that everything was going to be okay and that these people were going to take good care of him.

Right at that moment I was wishing more than anything that Alex was with us, with me.  I was alone though.  My mom had gone back to our house to shower and my mother-in-law had taken Riley and Cash down the hall to play.  I was alone, my fear level rising more and more, and here I was telling Cale that everything was going to be okay.  I needed someone there to tell me everything was going to be okay.  My little boy was screaming in pain while they tried to feed the tube back through the hole they had made only the day before.  The doctor told me that it was going to be painful but that they needed to do it as soon as possible otherwise the hole would close up and they would need to do surgery again.  I watched the doctor's face as he tried to put it back in but I could tell it wasn't going well based on his expressions.  Meanwhile Cale was screaming and crying in ways I had never heard before.  I told him to squeeze my hand through the pain and I imagine his grip was similar to mine when Alex said the same to me when I was in labor.  After a few minutes of pokes and jabs, Cale's surgeon looked at me and said the only way to safely proceed was to go into surgery...again.

That's when I broke down.

I hadn't cried up to this point but there was no stopping the tears.  There's just no way to explain the emotional exhaustion of watching your child be put to sleep and in my mind I had crossed that finish line yesterday.  I wasn't prepared to do it again, even as minor the procedure as it was.

An hour later Cale was once again being wheeled into the operating room.

Any progress we had made in recovering from the first surgery was now going to have to start all over.  Thankfully we were able to choose different pain medications and coming out of anesthesia was night and day from the day before.  Cale seemed to be more comfortable and once the surgeon was able to come out and talk to us, he sheepishly confessed that the tube may not have been placed correctly to begin with and that the tube falling out was perhaps a blessing in disguise.

The following days of recovery were much of the same.  We were able to start tube feeds on Sunday and he seemed to get stronger and stronger by the hour.  By discharge day, Monday, he was walking up and down the halls trying to get on any computer he could find. One would say he was finally starting to act like himself.

One thing I hadn't prepared myself for was the amount of responsibility we would have coming home.  While in the hospital we briefly learned how to administer his feedings and care for the incision sites.  I felt pretty capable to do all of these things but once we were discharged I literally had a series of mini panic attacks on the drive home.  I felt as though we were driving home with our firstborn child and we hadn't read any baby books or been around anyone with a baby before.  This was all so new to me and my lack of knowledge and feelings of unpreparedness were so unbelievably overwhelming.

A nurse met us at our house to give us all the supplies we would need and to set us up with a feeding pump.  One part of getting Cale back to where he needs to be nutritionally is to have him receive a drip feeding throughout the night.  I can honestly say this is what disappointed me the most.  This is what set me over the edge emotionally.  Cale's bedside no longer has a cute end table with a cute little car night light on top.  No, instead his bed side is decorated with an IV pole and feeding pump attached to it.  Each time I pass by his room I have to make a conscience effort not to look in, otherwise the tears start to flow again.  There's just something about seeing such a specialized piece of equipment in our house and knowing that my child cannot properly grow without it that makes me so sad.

We are currently trying to adjust to a new routine.  The "button" that is attached to the outside of Cale's stomach has two tubes that go inside; one tube leads directly into his stomach and the other tube leads directly into his small intestine.  He gets "fed" every three hours through the tube leading into his stomach and the tube leading into his small intestine needs to be flushed with water every four hours.  I feel like all I do during the day is connect and disconnect tubes.  I'm either cleaning all of the supplies, administering medicine, mixing formula, making sure Cale isn't doing something that could lead to his tube getting ripped out, or feeding him and the rest of the family.

I feel like a nurse without the paycheck.

I've been especially discouraged today because Cale is experiencing the same pain symptoms as before the surgery and I can't help but let my mind spiral to the bottomless question of, What if? What if the surgery didn't fix anything?  What if the surgery was just a mask over a bigger problem?  Sure, I won't have to clean up vomit anymore but at this point I'd rather clean up vomit than watch him hurting all the time.

I feel like our journey with Cale is a dead end road.  I'm so tired of this emotional roller coaster.  I was expecting a pain-free little boy at the end of this and my heart is breaking, once again, with the realization that this may not happen.