Can I be honest? I don't want to go through this. I don't want to watch our son go through a surgery like this. I don't want to be in a hospital or have him endure the pain. However, the burdens he has carried in his five short years of life (with having sleep apnea, waking up constantly throughout the night, and always being sick, ill, and angry) makes it obvious that he deserves a chance for things to be better. It's a difficult thing, but it's the right thing.
God made that perfectly clear through His overwhelming peace last week. The Lord had prepared our hearts for this. Why they feel so heavy now isn't that surprising. The surgery will take place on June 6th. We are beginning to make preparations for it. We know that he will be in surgery around 3-4 hours, in ICU for 1-2 days, in a regular room for 1-2 days, at home carefully monitored for 2 weeks, no physical activity or swimming for 6 weeks, and should be ready for most anything in 6 months.
Obviously, our schedules have to change, our lives are being altered a bit, and our son is going to undergo a big thing. It is just what God has in store for our family. Life seems to be easy and light at times, and at others, it is tough and heavy to bear. I am incredibly grateful that Jesus says His burden is light. He tells us to come to Him (Matthew 11:28-30). We will lay it down at His feet for rest. I keep imagining the magnitude of God's love for our son and how He sent His own Son to die for ours (and us), and I am immediately comforted by His Spirit.
Will you pray for our family and lift this burden to the Lord on our behalf? Specifically, pray for Elias' surgery to be successful, recovery to be swift, no complications will arise, and for peace for his precious heart and mind. Please pray that his brothers (at only 7 and 8) will act with and be given compassion, understanding, and love. Pray that we, as his parents, will be patient, peaceful, and prepared for what comes our way.
I wrote about Elias' diagnosis here:
http://jennarjohnson.blogspot.com/2017/05/perfect-peace.html
What is a Chiari malformation? Chiari Malformation Type I (CM) is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid.
How is it treated? If the symptoms aren't severe, doctors may recommend just monitoring the situation with regular MRI's and treating the symptoms individually. However, if symptoms are interfering with quality of life, are getting worse, or if the nervous system is being impaired, doctors may recommend surgery. The most common surgical treatment, performed by a neurosurgeon, is known as decompression surgery.
What is surgery like? Decompression surgery is a general term used to refer to any of a number of variations on the same basic procedure. The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF. The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy). Often part of the top one or two vertebra are also removed (laminectomy). At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty).
For more information about Chiari brain malformations and Decompression surgery:
http://www.conquerchiari.org/education/chiari-faqs.html
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