Thursday, October 18, 2007

Another waiting game

I didn't mean to leave you in suspense. The operation on Friday went fine. The first part went well but the second part failed. He started draining 2200 mL. I realize my millimeter count is not very fascinating but it consumes most of my waking thoughts and at any moment I can spout off his last reading and his average reading for the day and how it relates.

I kill at parties.

In spite of the failure, on Monday, at 2 PM for no known reason, his drainage went down to 60-80 per hour. The next day, 20-40 per hour. I was hoping yesterday would be the same but it was still 20-40.

I tried not to get my hopes up because a lot of things could interfere and make it appear that his drainage had stopped. But today the docs said they think he really is maintaining about 750 a day.

Back up three days however, to our worst fear come true. Face got a rare and serious fungal infection. It has laid him low like Ive never seen him before. If he has been awake for an hour total I would be shocked. He surfaces just long enough to moan in pain until something - mommy pats or position change or drugs - puts him back under. His doctors say they are more worried about him than they have ever been.

Everything is on hold while he beats this.

The problem is that in order to cure it they have to take out his central (pic) line which is delivering everything he needs. Some things can only be delivered that way that he will have to go without for the time it is removed. Like nutrition.

It feels like everything they do to help makes more problems. His lungs are going so they put in a high-flow cannula that forces air into his lungs. He is much MUCH more comfortable now that it is in. He doesn't have to work as hard which means he has more energy. To cry.

On the flip side, his drainage really is down and there is a good chance once his infection is clear, barring other catastrophes, we may not have to have any other interventions.

Since he is a huge brat he has leveled off at 700 which is the outside range of intervention. Meaning that at 800 they would persue a 2nd lymphangiogram/ligation, at 600 probably not but 700...

This fungus has given his body some time to stop the drainage on its own and I hope it takes the opportunity.

It's gonna be a sucky weekend (as opposed to the usual joy) because he will have to be monitored extra close. In laymans terms, he will have to get stuck for blood a million times and glucose-tested every two hours and poked and prodded.

This is what Ive decided is going to happen -

He will beat the fungi by Monday
Tuesday he will have a new pic line put in without complication
By Tuesday he will be draining 20 or less an hour so even if it increases slightly from the pic placement it wont be a big deal and will go back down in two days

If all that happens (and it will) then we will just be in for the long haul of drainage which takes, on average, about 3 months. Of course there will be in-patient rehab after that but please, we can do that kinda time standing on our heads.

In other news, last weekend I somehow became the mom of a person entitled to get his driving permit. I welcome this, as it is the first time in a while that my permission is more dangerous to the world than to my child.

:::laughs evilly:::

Good luck, pedestrians. Terror is on the road.


katied said...

I very literally thank God. And the universe. And freaking YODA, just to be on the safe side. And keep my fingers crossed and the vibes coming. I'm glad he's doing better. xxxooo

1blueshi1 said...

it's more than slightly amazing to me that you are dealing with such issues while I am listening to Seether's "Fake It" on (extremely loud computer speakers) repeat and killing a beer.
What a parallel universe, sweetie. I know that someday soon you'll be sitting in my shoes (okay, so that WASN'T my first beer)