Wednesday, January 11, 2017

Keeping vigil

The past few weeks have consisted of something we've grown accustomed to, namely sitting and waiting. 

On Christmas eve at 6:30 in the morning Dominic began vomiting and got the look I dread and always keep vigilant eye for- that one that lets me know he has a bowel obstruction.  I woke my mom and asked her to come right over so I could have a second hand when bringing him to the ER while Mike stayed home with the other kids.  Good thing I did, some fancy acrobatics were required to stand and clean up messes as he continued to struggle during the car ride.

The next 9 hours consisted of Dominic slipping in and out of consciousness, as is his normal extreme pain response, mixed with cries and screams on his part while the staff ordered tests and gave meds to determine the cause.  My mom and I took turns comforting him, holding him and praying. 

Mike and I made the difficult decision for him to go on to his family's Christmas celebration to keep some sense of normalcy for our children that Christmas Eve.  Before leaving for his parents house, he and the kids came up to see Dominic.  He prayed over him, gave him a blessing and what he thought may be his last kiss.  The pain of leaving Dominic's side was painted on his face as he turned to walk out of the door.  I smiled at the kids and told them everything would be just fine, Bubba just had a little tummy ache and needed "a little surgery." 

We both felt that deep hole in our soul from being separated and Mike felt numb as he went through the motions to give the children the life they deserve on Christmas Eve.  What a selfless gift he gave the other kids that night, one they won't understand for many years. 

We've learned that during times of great stress with Dominic we must keep a calm demeanor for the kids, no matter how dire the situation appears to us.  Their life is one full of happiness but also the stresses of watching their parents deal with emergencies with their brother.  They needed, we needed, for them to feel that this was just no big deal and Christmas could continue as planned. 

Twelve hours after I first noticed he was ill, we were sitting in pre-op, alone except for one pre-op nurse due to it being the evening of Christmas Eve.  At this point his little body had enough. That morning I had placed him on the vent to keep his oxygen levels up due to the stress his body was under.  All day I had removed it for various imaging tests and repositioning without problem.  But now, after 12 hours of this excruciating pain, when I removed the vent due to a dying battery he didn't breathe.  Immediately the monitor started alarming and the color drained from his face to a pale pink, then gray, then blue.  He was unconscious and completely still. 

I yelled for the nurse to grab the ambu bag on the bottom of the bed and began to breathe life back into him.  I was panicked and struggling due to an awkward position since I was holding him.  At that moment the room flooded with staff who were more level headed than myself and took over.  I stood by helplessly, shaking and watched as he pinked back up.  I remember the nurse at his head telling me over and over "it's ok mom, he's ok, you did good" though his only movement was the rising and falling of his chest as she gave him breathe. 

I gave him one last kiss and blessing as they wisked him back, still using the bag to breathe for him.  I believe it was at this point that his body would have had enough if we hadn't forced him to hold on a little longer.

Then we sat.  And waited.  And cried.  That evening he was in surgery once more to correct a complete obstruction (his third obstruction in his 5 short years).  And once again the surgeon told us afterwards just a little longer and it could have been a different story, his bowel had begun to split

As terribly stressful and frightening as surgery is, the real test begins afterwards.  Everyone leaves and you're left there to stare at your very sick, very pale child who is writhing in pain.  As much as the doctors try, getting his pain under control always takes a few day.  Dominic is just built different and what normally works for other kids just doesn't with him.

With the help of our family, we've kept vigil with Dominic this whole time, 19 days now.  We've had times of success, like when his bowel sounds started, and times of agony like when he had a bad drug reaction that left him jerking and crying for 2 hours during a failed PICC line placement.  And again, sadness when his gut went into shock and we lost all ground with the day of feedings we had started after 9 long days without food.

It was at this point we thought his time had come.  His tummy stopped accepting food and went back to sleep.  Our hearts were wrenched knowing obstructions are something that ultimately ends the life of kids with Dominic's syndrome.  We met with a doctor to discuss options and possible courses of action.

Another week of not eating, another week of holding his hands so he doesn't open up the incision site from him telling us he's hungry with the flicks he gives to his g-button to communicate that desire.  There were many nights we kept vigil with him in agony without a wink of sleep.  All we could do is stand there, hold his hand, or rock him, telling him it's all going to be okay.  Other nights we got to sleep but were continuously startled by beeping or the sound of his changing breathing pattern.  It is then that our night vigil would begin.

Though I've lost the ability to pray during this admission, I do look up to Heaven occasionally.  I have no words to say.  I'm not angry, I'm just... broken.  During this time I went to mass, purely out of my Sunday obligation, and I remember saying during my attempted prayer time "what do you want me to say to You?"  There just was nothing left in me to give.  I don't have eloquent prayers, I don't have enraged cries.  I'm just dry, like a desert.  Parched, lifeless. 

But then someone who has been through the hell of loosing a spouse told me that it's okay to have no words.  She said I didn't need to rush out of that place or force conversation.  Just be where I am, content with what I have for now.  She made me realize the vigil we keep is our prayer.  The hours of sitting at the bedside with an aching head and back or the hours of singing when there is no moisture left in your mouth is all an offering to God.  It is all a prayer, the only way during these times we can offer any praise to God at all.

We all have different ways we keep vigil.  For some it may be rocking a sick child for hours in the middle of the night.  For others, it's waiting up for a spouse to get home from work to make them feel important.  And for some of us, it's sitting in hospital rooms, waiting and watching. 

Whatever our vigil is, I find peace and joy in thinking I am sitting with Christ.  Didn't he ask His disciples to keep watch during His agony?  And they were overcome with sleep.  Maybe the vigil we keep can be an atonement to His Sacred Heart.  However weak I am, however easily it is for me to slip into despair, there remains an underlying hope in knowing I don't need to say fancy prayers, or anything at all for that matter.  All that matters is fulfilling God's will with the inactivity of sitting and keeping vigil.

Dominic this summer enjoying his swing

Praise be to God Dominic is doing great.  He overcame our big scare and his gut has begun accepting food again.  We are thrilled that he could come home very soon.  I wanted to write this to all of you earlier, but as I said before, I had no words.  I would sit with my hands on the keyboard, wanting you to walk with us, but nothing came out.  So here it is.  Not eloquent (I'll blame that on my extreme tiredness), but here none the less so you all can share in his journey. 

We feel almost certain this will happen again.  We never know which time will claim his life, but we are committed due to the passing of two sweet children of God whom we met only briefly
but loved just the same, to cherish each moment we have with him.  I promise this to the mothers of these baby-saints.  One woman who just buried her child wrote me this days ago:

"Remember not to live each day in waiting for him to die, momma!!  Live each day enjoying and cherishing the LIFE that he has and will continue to have beyond this earth!  I know it is almost impossible to enjoy those tough times, days, weeks... but enjoy it because when he is gone you will wish for those times too."

I will.  Promise.