Thursday, June 14, 2018

Up and Down and Up and...

We often feel like we're on a roller coaster ride, blindfolded, never knowing when a drop is coming or when we might reach a joyful peak.  We find ourselves way up high with great news one day, only to be quickly plunged back down to the reality that our precious son - Samuel David - is a very sick boy.  Then another high comes!  And we almost forget again.  We almost can't even remember how hard the day before was.  But we do.  The lows always come back to remind us.  That reality is always there, waiting to draw us back in again.

On Sunday, Samuel had a wonderful day!  It was the first day post-surgery #3 that he didn't need any extra sedation!  He was awake much of the day, which was fun because my parents were in town for a few days, so they got to see his eyes a lot!

We were greatly encouraged that Samuel seemed to be so much more comfortable with his trach than he ever was with the tube being in his mouth or nose.
Arkansas seemed like it may be just around the corner!

Then Monday came...

Monday was one of the hardest days Samuel has had over the past 11 weeks in Delaware.  We still don't know exactly why, but Samuel was inconsolable for most of the day.  When we arrived early Monday morning Samuel seemed to be doing well!  They had the echo machine by his bedside and were just waiting for the right people to get an echocardiogram.  Samuel's eyes were wide open so Seth and I began to talk to him and play with him.  But about 5 minutes into our joy-filled morning Samuel suddenly began to scream - his silent, heart-wrenching ventilator scream - and contort his body.  Usually Seth and I are able to calm Samuel down when he does this - he loves being patted, and having his head rubbed, and hearing our voices - but that morning was different.  Samuel would not calm down for anything.  His heart rate was racing close to 200, and his breathing was spiraling out of control, so they gave him some fast-acting sedation in order to bring down his numbers and to keep him still for the echo.  About 5 minutes after the echo was finished, the cycle started over again - Samuel woke up happy, very suddenly began to scream, became inconsolable, then fell asleep from exhaustion and sedation.  This cycle repeated itself all morning, and into the afternoon.  They kept giving him extra sedation as his heart rate and respiratory rate would rise, and at one point he had a fever, so they took cultures to check for infection - which ended up being negative.
They went ahead with the first trach change, which was scheduled for that day.  Ironically, Samuel woke up when they flipped him on his back for this, and he calmly looked around the whole time, then as soon as they left he became inconsolable again.  Finally, around mid-afternoon - whether from feeling better or from pure exhaustion - Samuel began to sleep much more comfortably and no longer had a temperature.
It was so hard on Seth and I as parents not being able to console our son.  It broke our hearts knowing that he was in pain and nothing we were doing was helping him.  Some days this is the reality.

But then Tuesday came...a day of FIRSTS!  I cannot adequately describe in words how completely opposite this day was from Monday.  I know God gave us this day to help us recover emotionally from the valley!
When we walked in Tuesday morning Samuel was wide awake and all smiles!  BIG smiles!  We were able to talk with him and play with him and he just kept on smiling at us!

PT and OT stopped by to re-evaluate him since he can now be more mobile with the trach, and he was having such a good morning that they tried holding him in an upright sitting position for the first time ever!  He has always had to be laid flat on his back or side up until now.

He LOVED it!  He was even turning his head a little from side to side as he heard different voices, which he is allowed to do now!  Before we always had to make sure he held his head still, but now we can encourage him to use his neck muscles!

Then they placed Samuel in my arms for the first time since his last surgery, and he didn't cry once.  He didn't even mind as the nurses transitioned him from the bed into my arms, which usually makes him a little fussy at first.

To top off the excitement of the morning, Samuel graduated from his little warmer bed to a big boy crib!

This means that he has grown a lot, because he was outgrowing the little warmer, and also that he is now able to maintain his own body temperature!

Seth also got to hold Samuel that afternoon, which they both enjoyed.

Yes, Tuesday was a joy-filled gift from God.  It melted away the worry from Monday.  It reminded us of God's great love for us, and that he loves to give us good gifts!

Then came Wednesday...a day that held some excitement!  Samuel was dressed in clothes for the first time ever!  He has always had so many tubes, wires, monitors, IVs, incisions, etc...that it is too hard to access everything with clothes.  But he has gotten rid of some of those things, and now that he has a stable airway with the trach, clothes are now an option!
As if he wasn't already adorable enough!

And thanks to his big Lasix diapers that he's known for, he went through not one...

Not two...

But three different outfits on day number one of clothes.  Since we only have 4 outfits that can work with his trach, central line, and other wires, it looks like we're going to be doing laundry every day to keep this cutie in style!  But he is so worth it.

Another milestone on Wednesday?  Samuel's first time sucking on a pacifier without gagging!

Because he's always had the big breathing tube running down his throat through either his mouth or nose, the sucking motion has always triggered Samuel's gag reflex.  But now that there isn't a tube in the back of his throat he actually did some sucking on his pacifier!

But Wednesday was also a little concerning...Samuel had a few episodes where his heart rate was very high, even when he was in a deep sleep.  The only way they could get it down was by giving him morphine.  We prayed that it was nothing.  We prayed that the milestones of that day would outweigh whatever was causing those couple of episodes.

That brings us to today...Thursday.  Today looks a lot like Monday.  And it's hard to accept.  We are blindly riding the roller coaster, and no matter how many times we come back down into the valleys, we always think there couldn't possibly be any worse valleys when we're up on the top.  On Tuesday, in the midst of our joy from seeing all the milestones Samuel passed, we thought surely it was smooth sailing back to Arkansas.  We didn't see the drop up ahead.
This morning we got to the hospital to find a very upset Samuel, with a very high heart rate and respiratory rate.  He also developed a fever throughout the course of the morning.  While morphine had helped bring everything under control on Monday and Wednesday, it wasn't helping today.  Samuel's heart rate didn't come below 170 even when he was sound asleep, and his respiratory rate didn't drop below 70, until 3 this afternoon.  They have again sent cultures to the lab, and this time they have started Samuel on antibiotics, because their best guess is an infection.
From down here in this valley, the next peak on this roller coaster looks so far away.  Just like every time we dip down, it feels like this time maybe we won't have enough momentum to go back up.  Our brave Samuel David has fought so hard, and his body is having to put in a lot of effort right now to keep everything functioning.

Please pray for him.

Pray for rest for his weary body.

Pray against any infection that may be in his body.

Pray for comfort and peace to surround him.

Pray for healing...
   - for his intestines
   - for his lungs
   - for his heart, which has developed some scar tissue
   - for his trach site, which is causing him some discomfort as it heals

This is His story, and it is all for His glory....
   even when it hurts


  1. I am praying for Samuel’s whole body to rest and heal. May the Lord bless you and Seth with peace and rest as well.

  2. Praying for your sweet boy. I am so glad to see the milestones he has accomplished and pray he feels better soon.


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