Tuesday, October 09, 2007


This is a picture of Face in his sporty chair about a week after the stroke. He is still having trouble eating but, for heart reasons, he isnt going to eat for a few weeks anyway so hopefully he will regain suck.

He has some right arm movement, excellent right leg movement, no left leg, some left arm. Some hand on both sides. He said "Da" but he rarely speaks because it costs so much - his whole body shakes at the effort to get out "Da." Smiling, he does (when he's not mad at us).

On Friday he went down for his 8th procedure and everything started spiriling out of control - he had high fevers from a pic line infection, desats (50s), high heart rate probably from fever and low blood pressure from a mix of bad doctor decisions (all the doctors rotate out and he had a whole new set on Friday).

So he went critical with so many meds they didnt have enough access - 2 poles, 12 boxes (each box has an IV med). He also is leaking 1500 mL a day from his chest tube. Monday they took him down for his 9th procedure - to give him an even bigger chest tube in a different spot and put a new (infection free!) pic line in his femoral vein.

With all the fluid people have begun talking about "6 months" as a timeline for being in the hospital. One doctor was telling me the record for drianage is 900 in-hospital days. Kill. Me. Now.

No, really.

If I look up at the road ahead I start to panic so I am keeping my head down and taking it day by day, mL by mL. I am not going to consider the therapy he will need or the help Ill need to take care of him.

With this kind of hospital time it doesnt make sense to keep having an apartment so J is probably going to live with his mom - for which I intend to tease him unmercifully. Terror is gonna stay with my parents and I will become a homeless hospital waif.

Trying not to panic and keep my sense of humor. I am even more determined to keep going to school.

I leave you with a picture of a different sort. Our lives have become so crazy-surreal that on Friday night, eve of my big Chemistry test, Face started really failing. As I stroked his head and bagged him (basically forcing air into his lungs for him) J held up my polyatomic ion flash cards and quizzed me.

I hope your lives are much more calm.

1 comment:

1blueshi1 said...

WOW. can't even begin to comprehend what you are going through, but you have the right attitude "sufficient unto the day are the evils thereof". don't think 900 days of drainage. and keep the flash cards going!
pouring out love to you & yours,