Headed Home Part 3 - Pit Stop June 22 2015, 15 Comments

August 24th, 2013

With sedation on board, we actually had a decent night.  He slept except for when his BP was taken.  Then he'd fuss, but I could soothe him back to sleep pretty quickly.  He loved having his chest pat.

I got a text that Kari would be coming by mid-morning with some coffee.  Praise the Lord!  I was so happy to see this.  It had been pretty lonely.

But at 7am, mid-morning seemed so far away, so I snuck out to get some oatmeal and a yucky, but free, coffee.  It was always so interesting to see the parents venture out from their kid's room. Like walking-wounded emerging each from our own unique battlefield, we were all sleep deprived, disheveled, red and swollen eyed, wrinkled clothes or pajamas.  We wore our P-badges without much notice anymore, as they pretty much became a part of us.  It was almost like a little fraternity, yet no one really spoke unless in an elevator together. We might have exchanged a meek good morning with a forced grin or make the extra effort to hold the door or push the button for each other.  There was just this mutual understanding.  We were hurting. We were stressed.  We were sad.  We were tired.  We were worried and confused.  You didn't ask questions, but your human curiosity wondered what they were up against. You could kind of get an idea by which floor they push in the elevator.  Floor 2 = bad, picu. Floor 11-12 = bad, oncology.  The other floors might be more tolerable, but regardless we were all connected.  Maybe it was strength in numbers? Even without knowing their exact struggle, you knew you weren't the only one.  

Kari came and after some updating and visiting, we decided she'd stay and I'd go home which would allow for Justin to come down.  The medication for the seizures, Sabril, had been delivered to our house and he'd be bringing it down so we could get it started.  I left around 1pm.  

 

It was a beautiful day, so I decided to take Remy and Sander to the pool, something we'd done maybe a couple times that summer. We met our friends Todd, Amber and their son James.  What a vast and welcome change from the 4 walls of the PICU.  It was hard not to look around in a slow motion glance taking in the life, joy, carefree fun, splashes, light conversations and WARMTH of the sun that was happening all around me.  Surreal.  I imagine it's similar to what a weary soldier might feel when re-acclimating to home after deployment. And if it were not for the two popsicle-stained faces that interrupted my gaze, I may not have been able to break out of the prison of guilt to join in the fun.  But I did.  We played hard and for a moment I didn't think about Bryer who was laying in a bed at Children's.  That was until I noticed one of Justin's friend's mothers was there and I said hello.  I knew she was fully aware of the situation and thinking for her (which my mom constantly warns against) I imagined she was appalled that I was there enjoying the pool with Remy and Sander instead of being at the hospital.  What kind of mother was I?  Back to guilt prison I went. 

But the kids had a blast and for moments I did too.  I reasoned that it was healthy for them to see their mom smile and to be with me having fun.  Later that evening, the three of us went to Yabos Tacos with Mom and Dad and then UDF for ice cream.  It was a nice change of pace.  My Mom and Dad had just returned from Indiana where they attended the funeral of my childhood youth pastor.  I had obviously been unable to go, but was shaken to hear of his sudden death and mourned for his wife and two high-school aged sons he left behind. She shared with me part of the message which rang truest for her.  It was about living….Bruce was really living now.  "And we want Bryer to finally live, really live," she said. She went on to express her anticpation for what God is going to do in our situation. She encouraged me, "We just need to keep trusting, honey. We've put Bryer in His hands and that's where he is best placed.  He will not forsake us or leave us in this."  Oh how true that was and would prove to be.  

Before bed, I got an update from Justin.  Remember the night they emergently put his central line in?  They had put it into an artery instead of a vein in his leg.  Thankfully, one of his PICU nurses found the mistake, but not before it had caused a major problem.  Poor baby.  He now had a clot in his leg which left it cold, gray and with a weak pulse.  As with any clot there is always risk it could dislodge and have fatal consequences.  They had to consult vascular surgeons from OSU as to what they should do and surgery was in the wings. But, with close monitoring around the clock they could see he was getting enough flow and with heparin (blood thinner) on board it was slowing improving. Surgery was thankfully avoided. However, it was enough to keep him in the PICU as heparin given to a baby is pretty serious, I learned.  Eventually, we were able to switch to Lovenox which we would later need to learn how to administer by injection at home twice daily.  Hemotology, another specialty was added to the list.  Ugh. 

The next few days were spent monitoring his leg and observing him on the new medication via EEG as he also began to recover from the enterovirus.  He was moved out of the PICU "to the floor" where we spent a couple more days ... and he was less than enthused with the ipad:)

Finally, it was determined he was well enough to go home.  So, later one evening we loaded a red wagon, grabbed the giant dog ballon that one of B's favorite NICU nurses had dropped by, got all his discharge instructions, injections and medications and headed out the door.  

 

Wow, that sentence made a discharge seem WAY too simple.  Ha. We got home that night, August 29th, around 10pm and were welcomed home by a trio of smiling, happy-to-have-you-back faces.  Here's one:

Ahh, home.  After a 10 day admission, I was so happy to have us all there together.  It already felt different.  I looked forward to living my new found freedom of embracing instead of chasing, gazing instead of tracking, snuggling instead of strengthening… Unbeknownst to me, it was a mere pit stop and would be Bryer's last. We'd be headed back to Nationwide Children's hospital in 36 hours.