Tuesday, March 18, 2014

Just a Hobby

I am a words person.  Not just that I like to use a lot of them (ha ha), but I am fascinated by their origins, meanings, and the way they work together in certain phrases.  My degree is in Vocal Music Education, and while I love all kinds of music, I always tell people that if you are singing a song with words, you better get the words right.  The composer used words for a reason- otherwise they would've let the instrumental music communicate all they intended.

As life goes on, I realize that until something happens to you, the weight of some words can't be fully felt. In a recent sermon, our pastor stated that "prayers aren't powerful until they have a name."  You see, when you are young and you hear someone say, "Please pray for my son- he is very sick", you think "Ok, sure.  I can pray for this random kid."  But when you become a parent, and you have a Real Son, and he has a Name, those prayers are desperate and you hope every person praying knows that.

This week, as I sat in the Pediatric Intensive Care Unit with our Sammy Brown, I realized that we let words just fall into our ears and move past our hearts all the time.  I need to listen better.

It is almost laughable, our life as it pertains to crazy health situations.  None of our kids, or my husband or me, have actual serious health conditions.  My 3 biological kids all have ongoing GI issues, which have resulted in multiple tests, specialist visits, procedures and hospitalizations.  But they don't have anything MAJOR.  So for kids who are relatively healthy, we are have come to experience a lot of medical STUFF.
At our Omaha GI specialist's office with my three crazy GI kids
We've learned the words.  We've learned how to speak in medical terms.  So much so that two different doctors at the PICU asked my husband and me if either of us were in the medical field.  We laughed.  No, we said, this is just a hobby for us.  I used to say that Boo didn't get to go to college- he just gets to go to the hospital.
Mr. Boo having yet another gastric emptying study

Most of our friends have never had a kid in the hospital, let alone 3 kids, with a total of 8 in-patient stays in 3 years.  Again, without any real serious health conditions to justify this.  We don't ASK to go to the hospital.  No, our doctors have PUT our kids in the hospital to care for them when it's not possible elsewhere. I seriously dislike the hospital -there is nothing fun about being there.  We go there because we've had to.

Mr. Boo at the start of his first serious bout with gastroparesis that resulted in a 6-day hospital stay, his third hospital stay at that point. 

We are grateful to live in a country with awesome medical care. And we've always walked out of the hospital with Our Kids who have Real Names. 

Mr. Boo has given us plenty of medical experience.  But this past week, Sammy Brown had to show that he is here to give Boo a run for his money in the "let's scare mom and dad" department.  

Boo at 6 weeks with RSV. Sammy Brown at 5 months with Rhino-Entero Virus
The twins both had pneumonia about a month ago.  That stunk anyway, but we were able to care for them at home with breathing treatments, antibiotics, and daily trips to let the doctor listen to their lungs to make sure they weren't worse.  They got better in about 10 days.  A week later, Sammy Brown got a runny nose and cough again.  Well, everyone and their brother has been sick this winter, so we thought it was probably just a little virus.  But he got worse. And worse. A nurse friend of mine listened to his lungs on Tuesday morning and suggested I take him back to the doctor.  I did, she said he his lungs were full of gunk, and sent him for another chest x-ray.  It was negative for pneumonia, so she said to do breathing treatments and call her if he got any worse.  

He got worse.  

He started coughing so hard he vomited.  He was wheezing and sucking air really hard to breathe.  Finally at 10:30 my husband insisted we call the doctor.  She admitted him to the hospital and told us to go straight there.  

I didn't want to go.  I was tired. I have 3 other kids at home.  But I knew we had to. 

When we first arrived at Heartland
When we got there, I though we'd have a quick overnight stay for him to get some oxygen and then go home in the morning. I sent my husband home to relieve my mom and stay with our other kids through the night.  Me and Sammy Brown settled in.  I held him as he dozed.  He began to wake and cry and then fall back asleep.  He got more and more distressed. His fever rose. They upped his oxygen and started an IV and took blood. They hooked him to a monitor to track his blood oxygen saturation. I held him for 10 hours straight without really sleeping.  Daytime came and he'd get better, then worse, and back and forth. It seemed like we might be staying another night. A few people came to visit us, but around 6:00 everyone left, and my husband was at home getting ready to come back up. Our pediatrician came and suggested we might want to go to Children's Mercy.  I told her I'd rather stay at Heartland (our local hospital) if we could. She agreed but said she'd be in contact with our nurses and would send him if he got any worse.

He got worse. 

About 18 hours later...
Around 6:30 he was struggling really hard to breathe.  They had changed him to a high-flow oxygen system that forced the air into his lungs.  At that time, the nurses came to suction his lungs out, which usually helped him.  But this time, after they did it, his oxygen saturation dropped and dropped and his lips started turning blue. They turned up his oxygen flow and he started breathing again quickly, but then would take a few breaths and stop again.  One of the nurses quickly said she was going to call our doctor, and when I laid Sammy Brown down on the bed, he just laid very quietly while we watched his chest heave up and down and his heart race and his head  bob up and down as he struggled.  The nurse returned to say our doctor was calling for a transfer to Children's Mercy and they called in the respiratory therapist to stay with him every minute until he was sent.  

Through all of this, I was mostly calm.  He was very sick, but still.  As he continued to struggle, I could tell our favorite nurse was getting more and more upset on the inside.  She tried to hide it.  Finally, she left once and came back.  I asked her, "So how does this work- the ambulance comes here? Do I ride with him?" She, in her forced calm voice said, "They might send the ambulance.  But they are probably sending the helicopter." 

Helicopter.  A word I know.  But my son? My 5 month-old, going on a helicopter to another hospital...what? My heart hit the floor.  I had no idea it was that serious.  I said her name- I know this girl, we've had her numerous times as our nurse and I really like her- I searched her eyes for reassurance. She told me it was just a precaution- that they wanted him to get there fast before he got any worse. I still saw the panic behind her eyes. 

The hour and a half or so between first hearing the word helicopter and when the helicopter team arrived were the worst (someone asked why it took so long- everyone who has been in hospitals much knows everything takes longer than you'd think- it's sorta crazy but they have procedures to follow.  Plus, he was very sick but he was still being cared for and not on his death bed, so I suspect they could be much faster if it was that bad). When the team got there, I immediately felt better.  We had the best of the best pediatric people in the area caring for our son.  Our Son with a Name. They loaded him up and put him on a crazy- looking stretcher and we walked with them as they rushed him down the hall and out the door to the helicopter.  He was going on a helicopter, without us, at 5 months old.  But I knew they'd take care of him.  They told us to go straight to the PICU when we got there to meet them. 
The Best of the Best pediatric people in the area- The Transport Team

Yah. My 5 month-old son is in there. Without me.
So there it was.  Craziest moment of my life so far. Watching my very sick baby lift off the ground in a helicopter without me and trusting he would be alive the next time I saw him. I've heard of other kids having to do this- kids I didn't know- but watching it happen and writing about it with our Real Kid is crazy. 

But the story goes on.  We spent the next 3 days in Intensive Care with him- experiencing some things I've only heard about- Ronald McDonald rooms for us to sleep in and eat, high flow oxygen systems, chest xrays, oxygen saturation and infection markers on blood work, sleeping less than 8 hours over 72 hours time, ICU doctors and nurses who monitor constantly, etc. It felt like an eternity. 

But he got better, and we were home within the week.  We walked out of the hospital with our healthy child.  
It just still feels surreal to write some of these words about us- our family. Our Child with a Name. And even more so, we heard other parents talking there with words we hope to never say. But we might have to. "No- she was in a car seat, but the car seat flew out of the car."  "No, we aren't sure how long he was without oxygen."  "The brain damage looks pretty bad. We don't know anything else yet." "The surgery wasn't successful.  It isn't looking good."  These words about their Real Children with Names.  

Real words matter to me.  I know that's why the truth of the Bible speaks to my heart so clearly. We've selected Life Verses for each of our children, and we pray these things over them.  One day you or I may be the ones hearing even more scary, sad, devastating, heart-wrenching words said about our kids or others we love.  And we may be the ones making a "hobby" of medical experiences, so much that we know those words too well.  In those days, what will our words to ourselves be? 

Sammy Brown's Life Verse is Philippians 4:4-7: "Rejoice in the Lord always.  I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything,  but through everything, with prayer and thanksgiving, present your requests to God. And the peace of God, which  transcends all understanding, will guard your hearts and minds in Christ Jesus."  I could write seventeen blog posts about those words alone.  But the main thing is having The Words inside of you that can quiet the noise and the fear and the anxiety and the devastation that other words we hear will bring. 

Our life is a song, and The Composer of our life is putting those words into us for a reason.  Otherwise it would just be a life of background music.  We must know the words. We must keep saying them.  Prayers aren't powerful until they have a name.  What are the words that stick?

There are words that we will hear spoken that will knock us to our knees and take our breath and want to steal our soul. Before that happens, now is the time to find The Words that will stay forever.  

You see for me, my faith isn't just a hobby.  It is real.  It is something I believe in to my very core, and while I am shaken up through the storms of life, I hold on to the Words and The Name that are the ones that will never change.  "In the beginning was The Word, and the Word was with God, and the Word was God." 

Don't get me wrong. Please. Please. I know hearing some of those words other parents have heard would knock me out- cold- deep.  I am not making light of that. The stuff that we've dealt with is simple compared to that. I am just working to make myself listen to the right voice, the right words, and to make the song of my life about something that is eternal, no matter what the external is. Easier said than done, and maybe that's what I've learned this week and what I want to ponder and take into my heart to change. 

My personal life verse is this- Lamentations 3:19-23: "I remember my affliction and my wandering, the bitterness and the gall.  I well remember them, and my soul is downcast within me.  But this I call to mind and therefore I have hope: because of the Lord's great love we are not consumed, for his mercies never fail. They are new every morning; great is your faithfulness." 

We are not consumed. Great is Your Faithfulness. Amen. 

What are your words you are building your life on, that you will stand on when harsh, upsetting external melodies are rocking you? Leave comments here to tell others.