Lets start with the fun stuff...We had surgery follow up part two yesterday with Dr P. This time he didn't find another reason to cut Carson open again :) (Unlike last time with the hernia's that magically appeared) We got to chat with Dr P and as he said to the Med Student this appointment was more of a social visit or us than medical. He is such a great guy! An no more appointments with him unless/until we need him again. If Carson has any complications from his PVT Dr P said he would be our go to guy for any surgery that's needed. Makes me a little more comfortable to know a surgeon if we ever need one.
And now the not so fun stuff...Carson's tummy has always been a little tricky ever since he had that virus in January 2010. It took us until about May of that year to finally figure out a formula that worked for him that didn't give his diarrhea.
We were nervous when we switched to pediasure, but when we did all was well.
So we didn’t think much of it when we made this switch.
According to everyone we talked to Portagen is pretty much the same as Pediasure just a different type of fat.
Well Carson had diarrhea from the day we switched him.
I didn’t want to overreact so we kept going with it with hope that his body was just taking time to adjust, but on Sunday Carson’s gut told us “NO MORE” loud and clear.
His intestines kicked it up a notch and pretty much demanded we stop that formula!
I switched him over to pedilite to get him hydrated and to give him a break.
His poor little red bottom couldn’t take anymore!
I called Dr R’s office 1
st thing on Tuesday morning and they got us an appointment for that afternoon, we were already going to be there for our meeting with Dr P.
Met with Dr B, Dr R is in Lebanon for three weeks.
After he talked to the nutritionist they decided to try mixing Carson’s formula a little “weaker” to see if that helps out.
It was 30 cal/oz and now it’ll be 24/oz.
Now we pray that Carson can tolerate this.
They said Portagen is pretty much the end all and be all of treating Ascited.
He said that while there are other formulas that would be ok for C to be on they aren’t as good, this is the best.
If this doesn’t work then we will be forced to switch to something else, but they wanted to give his a shot before we change anything.
We are to call back in a few days and let them know how it’s working.
With fewer calories I will be interested to see what this does to Carson’s weight.
We are still down about 2 pounds from his pre-surgery weight.
Which doesn’t seem like much, but when it’s 10% of your total body weight that puts things into perspective.
If I was down 10% of my weight in a month that’d either be a very good diet or a problem.
We are hoping that once we get things in the bottom area leveled out and get thing absorbing a little better he will once again start packing on the pounds!
We also asked Dr P to order a CDC and Auto Diff yesterday to see what that would tell us.
His CBC’s have looked so good since surgery (minus right after surgery when they took a nose dive for no apparent reason) there was some talk (very quietly as to not give us any undo hope) that things might actually be working in the graft, but just not able to be seen on ultra sound.
Well those hopes were pretty much completely struck down this morning.
With the new “My Chart” website that the U has you can get test results back online which is good and bad for me.
Good because I don’t worry about them and get them quickly and bad because I’m a little crazy and Google every little thing!
But Knowledge is Power right?
His WBC that had been at a 4.8 (5.0 is “normal”) is back down to a 2.7.
His platelets are still “normal” at 155, but that’s on the very low side of “normal” and they had been up near 300 two weeks ago.
So all in all his CBC was not the good news we had hoped for.
Makes me sad.
There is now pretty much no hope that by some miracle his surgery actually worked.
And now we move on.
