6/7/04 - Toby's surgeries will be on Friday. After surgery he will go to the ICU for
recovery. Once he is stable he can go back to his room again. Today was a quiet day
for him. Yea!
6/6/04 - Toby's Daddy's birthday yea! Also it's Josey's birthday. Today Toby
discovered all the toys attached to his crib. Twice he spent 30 min in the crib looking
at everything. It was great to be able to put him down without any crying for a bit. And
it was cool watching him look at everything.
He also loves going for walks in the hall and on the elevator because it's a whole
bunch of new stuff for him to look at. No matter how crabby he is he quiets right down
if we go for a walk.
6/5/04 - Argh. Toby pulled out his ND tube. Start over. He was kind of fussy today. I
wonder if the ND tube was bothering him. Otherwise all is well.
6/4/04 - Today Toby had an X ray study of his stomach in preparation for the nissen
surgery. His anatomy was perfectly normal, so they can go ahead and schedule the
Right after the Xrays I gave him a bath and between the two events he was tuckered
out. He snuggled with me quietly the rest of the day. yea!!!
6/3/04 - Not a lot of action today. Toby's morning Xray shows his ND tube is in the
right spot, which is good. No more fiddling around with that. He was really crabby
today again. He used to be such a mellow, quiet baby. I guess he's sick of people
poking at him. Gas is holding steady with a pCO2 of 60, pH 7.3, bicarb 32.
6/2/04 - Toby's blood gas is a little high still today. pCO2 was 59. But this is still an
improvement over his gasses prior to surgery. For those few weeks the pCO2 was
hovering around 80. And the other big improvement is his oxygen requirements are
pretty low, and very stable. Stable for the first time ever. This is huge.
This morning's Xray showed that Toby's ND tube has migrated nearly to the right spot.
He will get another dose of gut motility drugs and hopefully that will cause it to go
farther down the GI tract. He was wide awake all day today, mostly crying, and still
going strong when I left. They might want to cut back his coffee or something...
between that and talking to doctors all day it was a pretty long day.
6/1/04 - Well, Toby failed the swallow test. The test itself was pretty cool. They took
real time Xray movies of him while he drank some barium. We could see it collect in his
throat and then it being swallowed. Unfortunately we could also see it going into his
lungs. So in addition to refluxing, he can't adequately protect his airway.
So.... more surgery. The plan is to do a Nissen fundoplication (for all you Google
people out there) which will greatly reduce his reflux, and he will get a G tube so we
can feed him directly into his stomach. He also has a couple of hernias that will be
fixed. One stop shopping.
For now they placed a GD tube that does from his nose into his intestine, just past his
stomach. Interestingly, the tube is threaded to his stomach and then has to move to
the duodenum through normal GI movement. The check for proper placement with X