Although Mr. Boy's main issues are under control for the moment, it's the "little" things that drain us. It's funny that your child can have intense issues with many organs, but that doesn't bother you nearly as bad as the diaper rash. Mr. Boy doesn't mind the displaced organs right now, he minds his tender bottom. It's ok when he cries because he's a baby, but it hurts when he cries because he's uncomfortable and this week his crying reached a new decibel level. The worst thing has been that we had to limit his eating. I can only breast feed once a day now since he was scarfing down too much milk and they cut him back on his bottle feeding and just increased the nutrition he gets from the IV because his intestines isn't absorbing the nutrition from the milk (and the more milk he gets, the faster it flushes through his system without getting absorbed). So every time we feed him and he gets to the end of the bottle, he sits there wondering where the rest of it is, gnawing on his hands and screaming like we are the meanest people in the world because he feels like he's starving. :( He gets so upset that he grabs at his face and scratches himself. He has 4 scratches on his face today! Plus, the newest cast on his leg looks painful. This all keeps him from sleeping and sleep is so vital right now to his development. It is so hard to watch him suffer. So although the big issues are doing well, the little things wore us down this week.
He got another blood transfusion yesterday so that seemed to brighten his spirits, along with his color! :) So we think next week will be a better week. One of our nurses thought up a great way to keep his bottom dry. Thank goodness for innovative nurses!
|Safe in daddy's hands|
|Scratches on his face and mittens to keep it from happening again.|