(...still working on this post - he remains about as critical as yesterday)
Jaymun's lungs are sick. His latest arterial pCO2 (level of carbon dioxide in his blood) was around 60. His ventilation monitor
is 40 - that's a difference of 20. His Pip (high pressure setting on the ventilator) had weaned down to 42 early in the evening, but
had to go back up to 44 overnight to keep his back (monitor of kidneys, intestines) perfused (oxygenated).
The problem is his ICP (intracranial pressure). High levels of C02 (acidic) increase blood vessel dilation and pressure on the
brain, and there is no room there because of tumor edema, bleed, and bleed edema. We can't put in a EVD (extra ventricular drain)
because his INR time
is 1.49 (too high).
Constant infusions of Plasma and coagulation factors just can't seem to get his INR time down,
and are contributing towards him being "wet" (too much fluid) which makes it
harder on the lungs to exchange gases. To lower brain fluid, they have raised his sodium level as far as possible
...currently at 170 so we are slowing his saline drip.
He has respiratory acidosis
and metabolic alkalosis
His tummy is not getting worse at this point, but not improving either (an ileus with no bowel noises). From an intensive care standpoint this is
a lower priority (if it is not causing acute problems leave it alone). However, I could make it an asset and so
they agreed we should employ the same remedies that worked for last year's ileus crisis
Although this situation seems almost as impossible as back then. How do you get bowels moving despite heavy sedation and gastro-intestinal ileus (infected? ischemia/reperfusion injury? dexamethasone irritation?)
You have all probably figured out by now that one of the ways I cope with this sort of thing is by
diving into the details. But Jaymun looks increasingly pitifuly sick ...this is very hard. Due to the high vent settings, his subcutaneous emphysema/crepitus
is spreading across his chest and up his neck. It's all red, distorted lumpyness. I know when I throw numbers around it might seem like cold
details, but those numbers are meaning something very real on a minute to minute basis. For example his ICP (intracranial pressure).
When it goes up that means real things, and depending on other numbers like cerebral perfusion pressure (the difference between
mean arterial pressure
), and levels of sedation it can be either
scary, or just an indicator of something that needs to be done. Speaking of which, sedating him is tricky. Lately they added thiopental
which seems to calm down his ICP during times of stress.
And even though everyone is focused on his critical care hour by hour, don't forget that underneath it all his blast count is rising. All month I had been keeping his peripheral blasts in check (except for when he had a bad cold around the 12th.
If you look at today's lab chart
you will see that ever since we got here Monday night and I stopped herbal treatment, his blast trend is accelerating the way you would normally expect from this disease.
Our family appreciates your thoughts and prayers ...thank you for caring.
The thousands of you who are praying are Jaymun's best helpers, and you will be rewarded for your kindness.
I know the way seems impossible, but there is no turning back. Jennifer and I deal with things quite uniquely and that is
a strength of our family and gift to our children. I could never have immersed myself in Jaymun's treatment without her.
If it seems like I am fixated on the details, much of that is because I continue to be a vital component of Jaymun's care
...a responsibility I didn't plan to have
...it just evolved last year. God gave us a gift, a wonderful extra year so far with our son who is
one of the most excitable, cheerful little persons I know. Each of our children has their own special personality, but
it is remarkable how Jaymun follows in the path of his "blood-brother"
Devon who gave him the life gift of his own blood.
Part of why I am keeping this chronicle is to help me think and plan between one and two hour
chunks of sleep. You only see a small part, but that is because our family moments are moving
into the area where they are almost too meaningful to share. Moving precariously close to the place where details are unimportant.
Times like this are painfully rich beyond expression. How do you describe
watching a ten-year old say goodnight to his three-year old brother knowing he might not make the morning?
We are taking steps into the fog without knowing whether there is ground or cliff underfoot. I'm trusting that we have another Brother
who came Himself to go this way before us. Who gave us the example of trusting our Father as we go.
So Jaymun will come safely through ...either forward or up.
...No king is saved by the size of his army;
no warrior escapes by his great strength.
A horse is a vain hope for deliverance;
despite all its great strength it cannot save.
But the eyes of the LORD are on those who fear Him,
on those whose hope is in His unfailing love,
to deliver them from death
and keep them alive in famine.
We wait in hope for the LORD;
He is our help and our shield.
In Him our hearts rejoice,
for we trust in His holy name.
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.