Well because of the virus I mentioned in an earlier post and switching to a carb free formula, Keean actually lost so much weight he weighed less than he did when we were admitted. It was now August 17, we had been in the hospital since August 4 and we were moving backwards in the weight department. The doctors finally told me we weren't going to pay attention to his weight for awhile because they, instead, wanted to figure out what formula Keean tolerated best. So, that's what we did. Because he was on a carb free formula, they had to do heel pricks every 4 hours to check his blood sugar and he had to get a different form of sugar going through his IV to prevent any blood sugar issues. It was tough to see. He, of course, was a trooper. Taking on the heel pricks like they were taking his temperature. He was quite tolerant of all the labs being drawn and people surrounding him.
By August 19, it was decided that we had to come up with a new plan. Regardless of the fact that they had started a new formula and were increasing calories, Keean continued to lose weight. He was throwing up more, his stools started to increase again and he was starting to act a little uncomfortable. The GI doctor and the pediatrician came in and told us that they wanted to start Keean on TPN (Total Parenteral Nutrition). In other words (or words I understood best), Keean would be put under and they would place an IV in his neck which would pump all the nutrients we need through his blood. They wanted to give his GI tract a little break and ensure he was getting all the nutrients he needed. They told us more about it and wanted to just play it by ear as to how long he would need this for.
Here is a definition I found online: Parenteral nutrition (PN) is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. It is called total parenteral nutrition (TPN) or total nutrient admixture (TNA) when no significant nutrition is obtained by other routes. It may be called peripheral parenteral nutrition (PPN) when administered through vein access in a limb, rather than through a central vein.
This sounded fine and dandy to me in a stand point of gaining weight. It would be nice to have him getting all the nutrients he needed (not knowing what he was absorbing and what he wasn't from formula), but at the same time it was scary not knowing how long he would need it.
TPN is kind of a bitter sweet kind of thing. It guarantees nutrients, but it is dangerous. Being TPN is given through an IV, it runs the risk of the IV line getting infected which can make your body toxic and the TPN itself can be very damaging to the liver. This was scary. We were unsure how Keean would respond to it, if his line would remain infection free while we needed it and if we would ever be able to wean him off of it. There are many things that could require Keean to be on TPN long term or for life and this was horrifying to me. BUT I also couldn't watch him lose any more weight and knew we had to do it! So, they scheduled the procedure.
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