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Amazing News


10/4/09

9:30 PM

Not sure how I am going to say this, but his lungs have had a complete reversal here. Suddenly at noon today his respiratory stats started normalizing ...his arterial gases improved
    pO2: from 71.4 to 252
    pCO2: from 62.3 to 42.2.
His tidal volume started fixing itself so fast this afternoon that they had to break the rules about slow vent changes. Consequently his intra-cranial pressure is under control and since his vent settings are decreasing, his Sub-Q air is growing less. Along with his pulmonary edema correction, his facial edema is also lessening ...just by looking at him you can see the improvement.

Both the night and day-shift ICU nurses say they have never seen anything like this ...not in over 25 years.
We had been completely up against a wall with no place to go, no margin left.
Completely sedated, saline levels as high as they could go, CO2 levels high, ventilator maxed and lungs getting sicker, intracranial pressure increasing from cerebral edema (see previous post).

For most of the week Jaymun was the sickest kid on the entire unit. Shortly after midnight when I found the study I mentioned above (Vit E for pulmonary edema: http://preview.ncbi.nlm.nih.gov/pubmed/19484962), I got the approval from the attending around 12:30 AM to give Jaymun Vitamin E, and gave him 3 doses so far 300 units each of mixed (alpha,beta,delta,gamma) tocopherol and 20mcg of selenium sublingually (under the tounge) 12:40 AM, 10:00 AM, and 1:45 PM.

I'm sure there were many of you who saw my 11:00AM entry this morning and asked God with extra urgency for help
   ...well this was one of those cases where He was already starting to answer our prayers even while we prayed :)
Quite the celebratory mood around here at this point. Thank God!

Here are the lab details, but they only tell the numbers, not the poignant story of the hours between 8:00 and noon today, the resigned mood of Jaymun's caregivers, the hushed atmosphere at Jaymun's bedside.
Before:


After:



I would like to remind you that this is just the first step. Already coming into this week, we knew that Jaymun's AML is practically untreatable at this point given his succeptability to toxicity after already having months of chemo, bone marrow transplant, and two relapses.

He is still in intensive care, on sedatives that are addictive. that slow down his gut, and that he has a history of painful withdrawal from. He has poor coagulation and a bad bleeding risk with a growing tumor in his brain and blasts in his marrow. Even the natural treatment methods we used successfully last year are limited now because of the bleeding risk.

The past few days have shown us again that God can find a way, and give us the strength to walk it.
Please help us lean on Him for guidance as we go forward.


The LORD is my shepherd; I shall not want.
He maketh me to lie down in green pastures: he leadeth me beside the still waters.
He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the LORD for ever.

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