It's been awhile since last we left our hero and he is just that.
Holloween Day- He helped "patient services" pass out flyers on the Big Party @ 2:00 in the hospital
He "power walked" (his words) 6 laps- Did some homework
Took a break then to Party.
He was unofficially awarded the scariest costume. He went as scream with a few weapons of mass destruction (double headed axe, sword, a pretty mean attitude!)
Then to his home and trick or treating in the neighborhood. Quite a haul (none if which he can eat!). He fell asleep 1 minute after he got in the car to come home. Great Day. What a trooper.
Medical Update:
He is off TPN which are vitamins, minerals, etc. he needed. He is getting his nutrition through his fomula feeding of 50 ml/hr which he can tolerate. This is HUGE!
He was out of the hospital Friday, Sat., and today for 4/5 hours each day.
His stomach is continually drained into a bag he carries. This prevents the bile from building up. The few times he has a problem the line has been blocked or kinked.
Tomorrow the surgeons, gastro docs, and the hemotology/oncology docs are all meeting in conference, then with family after. Will fill you in on what we find out. We do know he still has a stricture that is preventing food from leaving his stomach and being digested. Stay tuned for more tomorrow.
Gotta Go. Keep him in your prayers- as you can see it's working.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
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