They are as follows:
- Fear of an infection such as meningitis. This is why addressing the CSF leak is important.
- His lack of nutrition. His coarct surgery will help because he can get off the prostaglandin.
- His AV Canal surgery, learning to eat, and weaning him off the ventilator are all longer-term goals.
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.
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:
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.
your steadfast faith is ............encouraging/inspiring. God is good
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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