Jaymun Foundation

Using His Tummy?

10/07/2009

Journal, Blood, - 10/07/2009 /

6:45 AM

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Last night Jaymun's fever rose and fell on it's own several times ...currently his temp is 38.3. But Jaymun is slowly moving in the right direction. We further reduced his dexamethazone yesterday. Last night when they suctioned him, his stats didn't bottom out like usual, and his ICP (intracanial pressure) spiked but then came down on it's own into the 20's. Yesterday he had been getting a dose of Thiopental every half hour to further slow brain activity but now it is once in four hours. His normal sedation remains (Dexmeditomidin and Fentanyl). We stopped Jaymun's Cistracurium (neuro-muscular blockade / paralyzing agent) last night. That can take hours or even days to resolve. Although sedated, patients will eventually start some kind of reactive movement and take their own breaths. The nurse saw one of his shoulders wiggle this morning. His ICP goes up and down averaging 30). His vent settings are still 35/7 with oxygen of 35%. He has 20ppm of Nitric Oxide mixed into his Vent to reduce pulmonary hypertension. We stopped Milrinone (vasodilator / heart output) ...his epinepherine is at .02 His blood sodium levels are 161 (they take a long time to fall).

Jaymun got platelets early last evening, then overnight 2 units of FFP and 2 units of Cryo. We are waiting for labs to see his coagulation numbers.


01:07 PM

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Neurosurgery decided to take out his "bolt" (the sensor that measures his ICP). Since everything is evolving in his brain as expected they think we should treat him as a normal kid (recovering from ARDS / Sepsis). The consensus is that possibly most of us may have higher ICP pressures from time to time, and if we keep chasing that number we might create problems for Jaymun rather than solve them. So we just removed it. Just like that. Now we don't know what his ICP numbers are, and so we can stop worrying about it, and stop over-sedating him every time they jump.

Jaymun's fever is 39.1 and he cultured positive in his endotracheal tube (breathing tube).

The doctors continue to be impressed with how his Albumin has kept up (most of the past week he had little or no TPN nutrition). That, combined with his Alkalosis, made a huge difference in fluid management ...his sick lungs barely made it through (at one point we changed his code status because everyone thought the end was near). And the lack of Acidosis probably gave us much needed margin to treat his brain swelling.

The only explanation seems to be the two things I was doing:
However I am not satisfied to just "guess" that this worked. I'm not positive any amount emptied into his intestines ...problem is his stomach would produce some digestive juices (although not much because he is on protonix) and it looked like I was always pulling out a bit more than what went in. So I've been feeling somewhat defeated. Yet I do not want to ignore these unexpected good results. The doctor admitted he's already been talking to his collegues about this because these levels have been a constant nice suprise.

I'm chomping at the bit to get helpful things into his intestines ...back to Google this morning (hence the delay on this post)
I talked to the doctor about this option of using something like erythromycin to make his stomach release food. He agreed it might work, however cautioned that since he has an ileus, delayed gastric emptying might be the body's own way of protecting the intestines. In any event, despit delayed gastric emptying we actualy seem to be having some success already (these past 8 days) with some of the anti-leukemia supplements (Green Tea, Quercetin, Indole-3-Carbinol, etc.). His platelets are not being infused all that often, and his marrow is making a high percentage of new good cells. So I looked up a few more studies ...lo and behold delayed gastric emptying might even HELP - in some cases supplements are better absorbed from the stomach, and the studies I am finding make me think that sometimes water-soluable phytochemicals may reach the blood in a more steady uncompromised rate when they are trapped in the stomach.
I've been pleasantly surprised at the openness of Children's Hospital to consider alternative forms of medicine. I suppose it makes a difference that I always have literature to back up why things should work, but from what I hear many other (adult?) hospitals still retain a considerable "paternalistic" culture. In any event, medical staff reading this will probably chuckle at the picture of a critical care team hustling to help the sickest patient in their unit, while the dad takes over part of the workspace with 25 bottles of herbs and pushes green "concoctions" into the patients stomach, and smelly anti-inflamatory, anti-edemic remedies under the patients tongue.

However, like I said the other day ...we got results so suprising some of these long-time nurses say they haven't seen in 25 years. And I joked with the doctor afterwards that next time he has a patient like this, he needs to call someone like me to put in the green stuff. He said the thought has already crossed his mind.

Jaymun has no idea the amount of attention and discussion that goes on every hour of the day about what is best for him.

I wonder what he is going to think happened, when he wakes up?

5:10 PM

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This is quite nerve-wracking.
Jaymun's fever is moving between 39.5 and 39.9 (we have ice on him)
His sedation is lower today ...and he is not paralyzed anymore. Making those changes before would have driven ICP up.

This morning they took out his ICP "bolt" so we do not see that measurement. But the last days it would climb whenever he had a fever or was less sedated. I know we are expecting to let that happen and not worry about it, but I also remember that his most sensitive response was to CO2 levels, and today they also decided instead of keeping CO2 levels around 38, to let them go betweein 40 and 45. So it is like they made four changes at once and turned off the ability to sense what is going on inside. I guess we can somewhat measure what is going on by head and kidney saturation numbers which are 73 and 68 respectively.
I guess here is where experience comes in ...it is hard to be a parent, and let the pro's guide things. I'm glad they see enough signs of recovery to move forward. I think they want to get him disconnected from all this stuff before he catches some kind of hospital acquired infection. They have decided he must be stronger and can handle a little stress. His blood pressure just fell to the 80's and even though he has bags of ice all around him his temperature is 39.5 They started epinepherine again and the bp came up a bit (107).

8:00 PM

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Temperature 39.3
Jaymun is twitching his eyes every once in a while. Not opening them, just twitching them. I'm not sure how he will react if we let him wake up and he finds out about the breathing machine that wasn't there when he last went to sleep.

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