Elizabeth Archives - Day 23

Dear Friends and Family,

If you're rushed and don't need the details, skip to the prayer requests below. But if you're interested in the the Saga of Elizabeth and her feeding tubes, read on.

To briefly recap: The composition of Elizabeth's chest tube drainage is lymphatic fluid. When humans eat a meal filled with fatty acids and triglycerides, the intestines absorb these nutrients. They are turned into "chylomicrons" that are then shuttled to the lymphatic vessels of the intestines, and from there on up to where the lymphatics meet the veins. From the veins, they are distributed to the rest of the body.

The big hold-up in Elizabeth's recovery is the healing of the lymphatics damaged by her surgery. If she were to eat a fatty meal right now (like breast milk), her lymphatic flow would increase dramatically and delay the sealing off of those damaged lymphatic vessels. So for now, we are trying to get a fatty-acid free diet into her. The Team has been trying to do this using a feeding tube.

There are several types of feeding tubes. The type Elizabeth has had is called a Naso-Gastric ("NG") feeding tube. It's a thin rubber tube that gets inserted through the nose, runs down the esophagus into the stomach. There is a Naso-Jejunal ("NJ") tube which is just like the NG tube except that the tip goes past the stomach and ends in the jejunum (the first portion of the small intestine). Lastly, there is a "PEG" tube, which stands for percutaneous endo-gastrostomy. This is a surgically inserted feeding tube that is placed through the wall of the abdomen and into the stomach or jejunum and stitched into place. The PEG tube is usually reserved for situations for a feeding tube will be required for an extended period of time. The NG and NJ tubes can only be used for a month or two before they start doing erosive damage to the nose.

As you have been reading, The Team has been fighting to get Elizabeth an NJ tube because all of her NG feeding tubes have resulted in vomiting. Why this is the case has been unclear. It could simply be that Elizabeth's throat is very sensitive to the presence of the tube and it causes her to gag frequently enough to bring the food up. Or it could be a problem with the pyloric valve. The pyloric valve is the outlet valve of the stomach. It acts like a sphincter, periodically relaxing to allow small amounts of food to exit the stomach and proceed to the intestines. The pylorus is something like the metering light on a freeway- controlling how much food is passing through the intestines at one time. Of course, if the metering light stays red all the time, the cars back up onto the on-ramp and cog the surface city streets. If the pylorus is not relaxing properly, the food fills up the stomach, backs up into the esophagus and causes vomiting.

None of Elizabeth's 7(!!!!!) feeding tubes has ever made it out of the stomach, even when using X-ray guidance. One went down into the stomach, did some loops in there and the tip came back up the esophagus and up into her nose! Yesterday's tube slowly slid back up and Sara found it coiled around in her mouth this morning! As a result of these difficulties, some have suspected something might be wrong with the pyloric valve. However, ultrasound pictures have failed to find a problem with it.

After her feeding tube had to be removed this morning, my brilliant wife had the brilliant idea of trying to feed Elizabeth the non-fat formula with a bottle! In retrospect, it isn't quite clear to us why The Team hadn't thought of this simple solution before. Maybe it's because the formula apparently tastes horrible and babies usually spit it out. Grandma Suzie tasted it and says it reminds her of wet cardboard (where she's been sampling wet cardboard remains a mystery). After hitting themselves in the forehead and saying "Duh" under their breaths, they agreed to let us try the bottle. We got off to a slow start. We ended up dripping about 1/2 a teaspoon into her mouth because she really didn't know what to do with the nipple. Even that small amount came back up about 30 minutes later. When we returned to the hospital this evening, Sara decided we should try again with a different nipple on the bottle. In less than 5 minutes she'd consumed a whole Teaspoon! That's all they want her to have each time for now. She didn't seem to mind the taste, probably because the only other thing that's been in her mouth is a pacifier and Vaseline. We're really looking forward to holding and feeding her.

Prayer requests:

1- That Elizabeth would continue to hold down her feedings, keeping us from having to try yet another feeding tube.
2- She had another fever today, so pray that she's not developing another nasty infection.
3- She's still on blood thinners for that clot, so pray that she doesn't have more bleeding or clot growth.
4- Her sodium is still low, but slowly rising. Where it is going is still a mystery.
5- She hasn't been peeing hardly at all. While this might just be dehydration, pray that it's not something more serious.
6- I will probably go back to work a week from tomorrow, a thought which is already making Sara and me hyperventilate.