Home from Boston Children's

[Guest guest]

Will was discharged today...with some new " hardware " and baggage! He

seems to be tolerating the g-j tube well, but we had to go smaller

and slower than the team originally wanted.

He's also tolerating some foods by mouth...low/no fat foods such as

applesauce, squash, sweet potatoes, broth etc. He's got an appetite

and oral need to feed by mouth and fortunately the team took that

into consideration.

Now we need some substitutes for his beloved Little Debbie Snack

Cakes which are definitely on the forbidden list. He needs no fat,

soft and easy to swallow snacks. Suggestions anyone?

The best news to report is that Will seems to be pain free! There

was an underlying current of agitation/pain that never went away

after the onset of this attack in April. Additionally he would have

intermittant intense pain episodes. He hasn't had one since last

Monday. That was severe, lasted several hours even with plenty of

narcotics. But that all seems to be gone now since he is off his

regular diet!

We are due back in Boston in 3-4 weeks. The discharge summary

mentions something about a possible ERCP? I'm not sure what they

are thinking there. Additionally Will's nissen site has once again

gotten too tight and will eventually need dilation. Dr. Fox didn't

want to go in now with the pancreas inflammed.

Anyhow, it's good to be home. Leah gets her cast off Wednesday!

Beth

mom to Will

acute(?) pancreatitis 4/03