Monday, September 19, 2011

The Worry List

Early last week, the ICU doctor sat down with us and wrote out what she called "The Worry List."  It was really helpful in the sense that it gave us an overall picture of what the plan of care is for our little guy and what are the biggest causes for concern.

They are as follows:
  1. Fear of an infection such as meningitis.  This is why addressing the CSF leak is important.
  2. His lack of nutrition.  His coarct surgery will help because he can get off the prostaglandin.
  3. His AV Canal surgery, learning to eat, and weaning him off the ventilator are all longer-term goals.
Every day, there seems to be new things we can worry about.  For example, he had a fever last night.  That could indicate infection, so they started antibiotics and a blood culture.  Lately we have noticed that the secretions from his lungs are a little pink.  They are blood-tinged.  That could mean nothing more than irritation or it could be something more significant like an infection.  So, they are doing another culture.  We should know the results of both in a few days.

We're still learning what it looks like to "not be anxious about anything" and to "not worry about tomorrow for tomorrow will worry about itself."  We long to trust God with these things, and He is using this little boy to teach us so much about trust.  We're so thankful to all of you who will share our burden and will lift that list up to the Lord.  We're so thankful that we can let Him worry about it instead.  "Praise be to the Lord, to God our Savior, who daily bears our burdens."  Psalm 68:19

Here is something from Brandon tonight as well: 

This past Friday morning as we were preparing to leave for the hospital, I told Mandy that I needed to go for a quick walk first.  I knew we could be walking into an extremely difficult conversation with doctors.  Jude's CSF leak the night before and shortly after the surgery was definitely not a good thing.  The weight of that potential conversation was unbearable.  I sent a text to a few friends asking for prayer then went for the walk.  Once I was on the walking/jogging path outside the Ronald McDonald House, I just began praying aloud over and over again, "Oh, God. Oh, God. Oh, Lord. Oh, Jesus."  It was a prayer of desperation, of crying out.  I couldn't get out much more than that.  We are so reserved as Americans in expressing deep grief and anxiety, but express it we must.  It eats us up, physically, emotionally and spiritually, when we keep it in.  A good buddy of mine and I agree that there needs to be a scream room at hospitals :)

As I circled back to the van to meet Mandy and head to the hospital, the peace of Christ was filling me and much of the anxiety was leaving.  Somehow, my crying out to Him was allowing for Him to meet me.  We still didn't know what we'd hear in the next half hour, but I was being prepared for difficult news.  I honestly don't remember a time when I expressed so fully to the Lord my fear and heaviness.  What a horrible weight for me to bear when, all along, Jesus wanted to carry it.  His promise to me (and all of us) is, "I will be with you."  Thank you!  This is such good news.  It's good news for all of us that look to You, Lord.  Help me learn to deeply, fully, unreservedly cast all my cares upon You.
 
CSF Update:  We met with the doctors late Friday morning and found out that the CSF leak wasn't good, but it wasn't as disastrous as we imagined.  They weren't surprised and said we'll need to continue waiting to see how Jude heals in the coming weeks.  The plastic surgeon had placed a temporary drain that is relieving the pressure from the CSF and allowing his skin to heal.  So, the CSF is draining there as well as from one small place in the suture line (stitches). 

 The neurosurgeon had placed a patch inside his skull to seal off his dura and keep the CSF in.  That, apparently, did not hold.  The hole, however, might be the size of a pinhole.  The body can heal itself and form cells over that patch.  So, that is why we are waiting and watching...to see if his body will seal off that hole.  Please pray that it does and that his skin heals.  Thank you!!

3 comments:

Holly Joy said...

Brandon -- there actually is a "scream" room in most hospitals... but, you'd have to be admitted for a psychiatric break down/disorder in order to use it :)
We are praying for you guys.

Kel said...

your steadfast faith is ............encouraging/inspiring. God is good

ren said...

When my son was in the NICU I would go home, scream and kick my trees in the back yard. I'm sure my neighbors thought I was nuts, but God met me there in all of my crying out. And I didn't have to repair drywall that way ;) We continue to lift up all of these prayer requests!

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