Monday, July 10, 2006 - evening

Mike is not responsive today. He is still in the high-monitoring NICU. He is having central nervous system issues that they are monitoring closely. Heart rate and respiration are irregular. It’s disconcerting (if not horrifying) to watch. His breathing is so irregular that it looks like he is dry-heaving, and has some frothing in his mouth. I also watched over 30 seconds as his heart rate climbed from 59 up to 141 and back down again. It’s all over the place- and quickly. But the fear was that any kind of med to bring his heart rate down (like lowpressor) could bottom out his blood pressure (which is on the low side, but ok). This afternoon, his wonderful nurse, Carol, watched as his heart rate bounced down to 60 and way up to 172. She consulted with the docs and they OKed a low dose of lowpressor. As of 8 pm, it seems to be keeping the heart rate under 130, though it is still bouncing around down in the 50s and up into the 120s.

It looks as though this morning he was heading in the direction of DIC, but his coagulation factors got slightly better as the day went on. (originally it was his fibrinogen that was particularly high). They have discontinued his heparin (blood thinner to prevent clotting), as they fear that he might have been having an adverse reaction to it.

His potassium and phosphate are low, but sodium is good. His kidneys are fine. His platelets and hemoglobin look good.

They’ve done scans of his groin to check for internal bleeding, scans of his lungs, and scans of his brain (CT and MRI). Currently there are no signs of internal bleeding.

MRI was just being done around 8 tonight, so we’ll have to wait for the report tomorrow am. He was also getting a large dose of another steroid to reduce brain swelling (solu-cortef, I think).

Andrews and Evans were both in to see Mike this morning and evening. They both believe that the tumor (and cyst) are causing central nervous system issues. Hence the heart rate and respiratory issues are not true cardiovascular or pulmonary problems, but rather symptoms of midbrain problems. The swelling in the midbrain area (perhaps just from Friday’s surgery) could be responsible for those issues. They really aren’t saying much in terms of the details behind the “why” here. I know everyone wants to know what the f*ck is going on… and trust me when I tell you that I have asked every question up and down. The gist is that Mike has a lot of complicated issues of central nervous system, electrolytes, and hormones. They are all involved in a delicate dance day-to-day. Once one of those things is f*cked up, everything is f*cked up. At least, that’s my own pithy little version.

I realize everyone would like more details because everyone would like to be able to fix this. I have told you everything I can. I’m doing the best I can as Mike’s advocate. I say this because I’ve been getting so many questions from friends about the details of these latest complications. My true sense is that there is a lot of uncertainly on the part of the doctors. Hence my inability to explain what the f*ck is going on.

At one lucky point today, I squeezed Mike’s hand and said I love you. He squeezed it back. He is in there. Somewhere.

Thank you to all of our amazing friends for being with me today – in person and in spirit.

Today was dreadful, but it’s just a day. Tomorrow is another day. And after that, another will come, and someday, we’ll be in a different place with this disease.

1 comment:

Anonymous said...

I don't really know what to say. I want to say something but keep coming up blank. Me speechless? That f*cking tumor!!!!!! Hang in there sissy. We love you all and are here for you. Tomorrow will be a better day.

Love, Michelle, Scott, Taylor &
Jamie xoxoxoxoxoxoxoxoxox