Monday, December 9, 2013

How we got here

I'm not sure how to even put into words what has happened with our girl over the past few days.  So, I will do what I do best and just stick to the facts.  I can do medical, but as I sit here by her bedside wedged in between her and the ventilator I feel exhausted and overwhelmed.  

Sophie Kate started getting sick on Monday of last week. In classic SK form she slept most of the morning and then spiked a fever of 102.9.  We went to the doctor and got her usual treatment for when we go in for stuff like this...a Rocephin shot and then home on antibiotics.  Usually I have my smiley girl back by the next morning, not this time.  After talking to our Pediatrician, we went in to see SK's pulmonologist on Thursday afternoon.  After telling him of our days with low O2 sats, in spite of suctioning and breathing treatments, lethargy, fever and a lack of response to antibiotics, he felt like we needed to be admitted.

We found out Friday morning that SK has metapneumovirus.  It is a fierce respiratory virus.  The doctor told us it would get worse before it would get better...unfortunately he was right.  On Thursday we were admitted to the ICU, early Friday afternoon we were transferred to the Special Care Unit, which is a step down unit from ICU.  Our stay in Special Care was short lived. SK was feverish, breathing very rapidly and working really hard to take those breaths.  Her room suddenly looked like a scene from a TV medical drama.  There were 25 or so people in and out of the room ranging from doctors, to nurses, to respiratory therapists all gowned, gloved and masked as if they were in some kind of contamination zone.  

There was lots of commotion with folks doing their job...a well oiled machine underneath the chaos.  There was talk about a breathing tube and that's the point where I knew things really were going to get worse, um awful, no unbelievably bad before it got any better.  The doctors opted to put her on bipap first with the consensus being in the room that it wouldn't last and that within minutes of being put on bipap she would have to be intubated.  Well, they were kind of right on that one.  She actually stabilized for a few hours on bipap (which is kind of like cpap if you're familiar with that).  Her rate of respirations decreased, her breathing became more even, her color was good and she wasn't working so hard to breathe.  

During the time she was on bipap we were moved back to the ICU.  After about an hour back in the ICU, she started doing all those same things again that she had been doing back in Special Care.  The doctor came in and told us she felt like we were all (meaning the medical team) just putting off the inevitable and that what our girl really needed was to be intubated.  As painful as that was, we knew she needed it too.  

Somewhere around 10:00 on Friday night when we are usually home with our group popping popcorn and watching a movie we found ourselves in the ICU of Children's Hospital utterly helpless as our daughter was placed on a ventilator.  I'm pretty sure my feet would have been propped up in front of the fire and Frank would have been curled up in my lap.  Instead, I was the most devastated I had been in 6 years.  

When we saw her after the tube had been placed she was completely sedated.  The silence was sickening.  She couldn't have made a sound if she had wanted to, it was heart wrenching.  The room completely cleared out and Chad and I were left once again at the bedside of this girl in stunned silence. Her vital signs which had been setting off alarms almost continuously for some time were now nice and neat and within normal limits.  It was a weird almost too perfect feeling because we knew that a machine was doing all the work for our girl, but she was calm and was no longer struggling to take each breath. 

The purpose of the breathing tube for Sophie Kate is so that she can rest and her lungs can heal and so that this dang virus can get the heck out and leave my baby alone.  There has not been much change in her since she was placed on the ventilator and that was to be expected...she is supposed to rest. We have been told that this will be a long road for her and us.  I am having to wrap my mind around a prolonged inpatient stay.  There is no talk of her coming off the vent right now and there is no talk of her coming home any time soon.  Here, as in the NICU right after she was born, they keep us focused on just one day at a time. Let's manage this day...these next few hours they say and I want to look at about 16 days from now and just cry.

How do we do this? How do we manage life at the hospital and life at home?  How can we be here for Sophie and at the same time be there for Cooper, Jacob and Grey?  How can I do all of this and fall completely apart?  Because that's what I want to do I want to fall completely apart. There is no extreme I haven't reached, I am exhausted mentally and physically. I can go from asleep to awake in .5 seconds and from "handling this" to ugly crying in less time than that.  Me and my nursing skills are stretched thin, I am out of my league here.  I feel split in two, I want to be at the hospital and I want to be home taking care of my boys.  I want to be doing fun Christmas stuff with them and maybe even managing to put up some outside decorations.  I also want to be here taking care of her and being involved in the discussions the doctors are having about her care.  

Laying in a hospital bed just makes you look sick and she does and she has every right to because she is.  Her brothers came to see her yesterday and it was good.  Grey misses her so much and it was good for Cooper and Jacob to come up here and see what's really going on.  I have a feeling it may have been worse in their minds than it actually was once they came up here and laid eyes on her. It was emotional at times but it was good.  She got to hear their voices and I imagine she was thinking it was pretty good for us all to be together again.  
This about tore my heart out.  They miss each other so much.  I just stood back and let him have his time with her.  
While we sit at her bedside in our grief, Our God is not wringing His hands in despair wondering what will happen.  She has been His from the beginning.

Psalm 142:1-3 "I cry aloud to the Lord; I lift up my voice to the Lord for mercy.  I pour out before Him my complaint; before Him I tell my trouble.  When my spirit grows faint within me, it is You who watch over my way..." 


dawn said...

so much love and prayers for you.

Scot said...

Praying for y'all.

Señora Leopard said...

Sara Marie and I will be praying for your precious family tonight and every night until SK comes home!

Pam Shepard said...

Prayers for your sweet family! I don't know your older two boys but I know and love your Sophie Kate and sweet Grey. I will pray for your strength and for Sophie Kate to heal. Pam Shepard

Jaime Giangrosso said...

Love you all so much! If you need anything, let us know! Tell her that Coach G knows she will get stronger every single day!

Anonymous said...

Please know I am praying for you guys, and I just thank you for your transparency in this. I can't imagine, but I can support. Your boy is being taken care of here at school, and prayers are being lifted to the Almighty Healer. Much love, Mrs. Mc