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Watching and Waiting

Journal, Blood, - 10/11/2009

10:00 AM
Jaymun's fever dropped to 37.5 (99.5).
His heart rate settled to around 140
We've been able to significantly wean the epi and norepi and stop the milranone.
...and he started peeing again early AM (after midnight) and has continued to output around 40cc per hour.

Like I noted last night ...I had switched to milk-thistle for extra kidney/liver support.
I also temporarily dropped green-tea and made a few other changes.
I went to bed early AM feeling like we had made some changes that might help.

When I woke up Paula (nurse) was excited that he had started peeing, but she also informed me that they gave him a dose of hydrocortisone (steroid) last night to try to help raise his mean blood pressure above 80. My heart sank because I knew what that would do to his white count. Yesterday we had gotten a nice lymphocyte bump thanks to the astragalus, but sure enough, on labs this morning his white count fell to 2.6 and blasts increased to 10 and his DIC picture got worse.

04:00 PM
We're spending the day watching his foley tube for pee.
His urine output fell down to 28cc per hour this morning and has held there since.
With meds and IV we are putting in 25cc per hour
   ...at this point the running total for the day is -84cc (good because we are trying to temporarily "dry out" his blood to reduce edema (by pulling water out of the tissue spaces into the blood).

05:45 PM
After every few hours when I check stomach residue, the dose is now looking exactly the same (volume, texture) as when I put it in. So it seems his stomach is not making digestive juices. Possibley it is not being perfused (getting proper blood/oxygen). His kidney perfusion does not seem as high either. And he is only outputting around 20cc per hour urine, trending back towards retaining fluid. However the rest of his stats are holding steady: heart rate 150, blood pressure 116/76, temperature 37.6, central venous pressure 13 (he is on .1 of Epi and .08 of NORepi - that explains the higher heart rate).

For the record, one thing I haven't mentioned the past three days is that I've been worried that his gums are infected. I suppose the swelling could be from edema, and cultures haven't shown any bugs - also he was on days of broad coverage antibiotics. But still, if I tapped his lower teeth a few days ago, they would shift in his gums and he would jerk his head. The amount of swelling and disfiguration to his face makes me want to cry. Besides eyelids puffed out 3/4 inch with red blood blisters, his tongue is swelled so much I can hardly pry it up to check underneath. His lower gums are swollen above the tops of his teeth in two places. They seem to think that it is just edema related to his fluid control, but since his fevers were persistant, his temperatures rising, and every time his sedation got light his heart rate took off I was afraid he was in terrible pain. So just to be sure, I've treated his gums the past three days with a solution I've used on myself once before with fantastic success for gum swelling (I've personally had complete resolution of significant refractory gum swelling in 36 hours). My "mouth treatment" is comprised of a few ounces of ionic silver with a few drops of myrrh essential oil. Periodically through the day I drew some into a syringe, irrigated the area around his teeth, then sucked it away.
In vitro cytotoxic and anti-inflammatory effects of myrrh oil on human gingival fibroblasts and epithelial cells.
Silver in health care: antimicrobial effects and safety in use.

I held his hands before, and got a reaction ...both his hands twiched. Somewhere under all that sedation Jaymun is sleeping. I can't go in there and be with him. I'm trusting that Jesus will be there and make him feel safe. I don't want him out here with his body in the horrible shape it is. What horrible trauma that would be for him. I want this to go away as quick as possible so he can wake up and not ever know what we had to do to help him get through this iatrogenic crisis.

We're playing some soothing music in this room also. I admit to a certain level of impatience ...the staff here is doing a fantastic job of answering my questions and helping us understand how to interpret and respond as Jaymun's condition evolves. Jennifer joked today that they will all expect bonus pay for spending the day working in "Jaymun's room". I feel like we are again sitting on a plateau where any move we make is crucial. I'm not sure how many more reversals Jaymun's body could recover from ... so I am doing my best to be a part of every significant conversation and decision.
I think Jaymun deserves no less

   ..."God, give us all wisdom and bless our efforts"

07:15 PM
Many of you have mentioned feeling helpless. I have something for you to do for Jaymun. Sometimes I have the feeling that a certain song would fit a day's post, but I've been to tired to remember or look them up. If you have an idea email guestbook@jaymun.com with suggested artist/title (link?), and I'll play the song here in the room for Jaymun.