Monday, August 2, 2010

The dark side of the moon

After a consult with the hospital dietitian (shudder) yesterday morning, we "agreed" that Tomas would get 860 calories per 24 hours while in the hospital. He gets 800 at home but of course they wanted more. Ok fine, he can take 60 extra cals for a few days. However, the nurse arrived with the first bolus and it was 230cc. He gets 200 at home, he has never had that much ever. I tell her he is going to retch and gag, she says that is what the doctor ordered. Sure enough at 206 he starts gagging away. I stop the feed and let about 30 out.
4 hours later the nurse comes with the next bolus - 230ccs. Are you kidding me? The doctor knows, he even told the nurse I warned him it would happen, but he wants to try again anyway. Ok, but give him a break in the middle - she did, about half an hour and it worked.
Next up is the continuous feed, it should run from 10pm to 6am, just like at home, but it doesn't get turned off until 8 am when the day nurse comes in with a bolus of - you guessed it 230ccs. You can't do a bolus on top of a continuous that just finished and ran for 2 extra hours! Those are doctors orders. Ok fine. This time he started gagging after 100 ccs. That's it, I'm done and I'm mad and I want them to call the doctor because with every retch my son gets closer to a third nissen not to mention the aspiration risk.
While the nurse is gone the new Dr for today comes in and the first thing I tell him is that Tomas is being overfed. Lots and lots of other things get discussed (another post) but in the end he sends the nutritionist back who says that he IS being way overfed. About 250 cals over and that was not the program she recommended. She doesn't know why the Dr did what he did but new Dr is ok with whatever she says.
So this time around I say 800 for the day, that's it. Fine. Nurse comes in with his noon bolus and it is the correct amount (200cc), hooks him up and leaves. About 2/3 into the feed Tomas starts acting really fussy and uncomfortable - I check - and the nurse hooked the feed up to his J port. He was bolused into the J. I freak and the nurse and charge nurse come in and apologize like crazy. I make them call Tomas' GI (at another hospital) and find out what we need to do. He says he will be ok, but it will cause a more drastic dumping than feeding into the gastric port and to watch his sugars close.
About an hour after that, Tomas was sitting in his crib playing and just looked at me and started sobbing. I checked his sugars and sure enough they bottomed out. After both nurses come in and fix him I ask why we are we even still bolusing? Haven't we already established he has dumping syndrome? Can't we switch to continuous until we get the other issue figured out? They call the new Dr. and he says "Of course" Ughh, why didn't you do that in the first place???
We are waiting to get sent up to a different room on the endocrine floor. It was full when he was admitted. The fasting study won't start until tomorrow and I think we are here until at least Wednesday.


  1. Oh man! I am sooo sorry. You are going thru hell this week. Not fair. Hang in there :)
    I think I need to say a few extra prayers for you today.

  2. When you do get the heck out of there, SEND THEM YOUR BILL!!!!!! Praying for your sanity!

  3. Will they ever listen to us mom's?Ever?Beyond frustrating and the one who pays is little Tomas.We continue to pray for answers and praying home will come quickly.

    Much love from California.

  4. Insanity..... Yes they need to pay you since you are the only one who is thinking. Praying tomorrow will be a better day.

  5. Poor Tomas (and mommy too)!! Praying for answers and that you are all resting in the comfort of your own home soon!