At this point, Summer just turned 7 months old and now weighs 13 pounds. She has had a few set backs, though minor ones. Last week she spent 3 days in the hospital with diarrhea again. She had been there for 8 days at the first of the year for this...though this time it was because of a stomach bug or something. They tried to grow all kinds of cultures, blood and stool, and nothing ever grew. After 3 days of getting rest and re-hydration she was good to go again. Ever since she has done just great.
She still runs her TPN for 20 hours each day with Lipids for 3 days a week, but this only accounts for 30% of her total calorie intake. The rest of her calories are obtained through her NG tube on a continuous drip running 40 ML's per hour. We also give her a 1 ounce bottle 4 times daily to get her used to taking a bottle...and squeezing in a few extra ounces!
A few weeks ago, her doc told me her labs look great and she shows no sign of liver disease. Besides the need for an intestinal transplant, alot of SBS (short bowel syndrome) kids require a liver transplant as well. Being soft tissue organs, these are two very risky procedures and having the liver damaged makes things very bad. Fortunately for Summer neither is the case so far. The docs feel she can work her feeds up to the point of getting completely off the IV and just rely completely on food/formula. When this happens, the risk for liver damage will be eliminated as it is caused by the TPN/Lipids in the blood stream on a constant basis. I was also told by a nurse, this last time she was in the hospital, that it is incredible that as small as she is, she can maintain her blood sugar for the 4 hours she is off the IV each day. Most SBS kids on an IV run for 24 hours each day....so constantly, hence the liver damage risk is increased greatly.
And the chunkin' up has begun....