A text I sent to my wife today: I've been thinking this last year would of been easier for him in heaven....but I remember this season WILL pass and he has a lifetime with us weather that's 5 years or 60 (I think he will live a fruitful life once this season passes).
Hate this hydrocephalus and lack of major recent advances.
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My shirt says "Kuwait" a vet/patriot bought it for me. I'm a vet but I've seen no wartime; I have seen and am fighting this war on hydrocephalus with my family, friends and the community of hydrocephalus.
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Medeos adjustable valve with anti gravity device
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Night prior to surgery
Keeping his head down due to overdrainage
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Overdrainage of CSF
Over-drainage
http://hydrocephalus.allanach.dk/complications
Over-drainage is a more difficult problem, although a higher pressure shunt will initially solve the problem, it is not usually a long term solution. Studies have shown that the use of an 'anti-siphon device' (a small button inserted into the shunt tubing) will often solve the problem, but this does not always work. Some shunts have these built-in, but neurosurgical opinion varies as to whether they should be used. To change a valve pressure it is necessary to remove the valve and insert another. The 'programmable' or adjustable shunt is intended to allow adjustment of the working pressure of the valve without operation. The valve contains magnets which allow the setting to be changed by laying a second magnetic device on the scalp. This is useful where the need for a valve of a different pressure arises. The adjustable valve is no less prone to over-drainage than any other and it cannot be used to tre
Hawke is showing some signs of improvement. Seeing some redness below his shunt scares the heck out of us as it can be sign of infection which equals removal of all shunt stuff and heavy antibiotics=long time in hospital, risky scenario. We prayed and rebuked infection in Jesus name while he received benadryl. It appears to be cleared up. . . Half a pheww let out and when it stays away the rest of the pheww. Praise Jesus regardless! Helping us to walk on some rough water.
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Perseverance
Today were taking Hawke to Children's hospital. A slow decline since last surgery and near an hour of screaming at everything last night is enough evidence to decide its time. Options? Brain surgery to place an ICP monitor and see the #s and/or insert icp and new shunt again. He has the highest anti gravity device placed currently connected to shunt. Another surgery to take my son into, another walk down the O.R. hallway, another gas mask to force on his face, another time to wait for post op and recovery, another walk of faith, another day of life! Another step closer to the right shunt, another day Closer to a heAling, another day to Champion the family I'm blessed to be Husband and Daddy. Thank you Lord! Praying for strength, understanding and wisdom.
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Slow decline
Hawkes been on a slow decline with some occasional and sporadic improvements. Calling Nuerosurgery for an appointment; not liking what were seeing thus far, anticipating healings while preparing for surgery. Will continue to pray for healings and miracles! The enemy will not take our joy in this life, joy in Hawke's life or our Joy in our amazing Lord!
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Hawke has been making some progress. His appetite has slightlly increased (any increase for Hawke is significant) but is still small (maybe one meal a day, some snacks on average). His shunt appears smaller yesterday but doesn't feel swollen (called nuero, they are calling back). His stuttering has slightlly increased, eyes crossing more freq? Unequalized pupils continue sporatocally. So what is goin on with the boy? Behavior is generally good for attitude but he has moments every day where he is very whiney....how much of that is just 3 year old kid stuff? How much is Hawke with brain damage and not a shunt failure or overdrainage? Read some medical documents recently that highlighted the brain damage he has received from hydro (pre-shunt or post ICP 136) . Nuerosurgery callen soon, seeking the Lord and using discernment.
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5 days post brain surgery. . . How is Hawke doing? Honestly its hard to tell. . . He seems to be doing well and good in some areas , yet some post op symptoms mirror shunt failure symptoms. This is a very dis comforting and nausea ting scenario as parents; much more difficult as the patient! This is hydrocephalus. By faith we lay our heads down to sleep unsure if an urgent failure symptom will emerge during the night or during the next day. By His stregnth we can overcome!
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2 months until DC trip to speak to many members of congress. With 7? Brain surgeries this year we are bringing some passion. Hawke acted phenomenal yesterday, it was amazing. How long will it last!? This day started at 730 monday morning. . . Its 518am almost home and can't wait to sleep in the same bed with the love of my life
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