April 21 Post

Hello everyone,

Today wasn't the best news we received as we've seem to hit a bump in the road. Today, they had intended to insert a new NG tube (Nasal to Gastro...) to send food to his tummy again. Well, he threw up a little before they started. They called it bilious. You don't need to read about it, it's basically bile and its nasty. With that, they chose to cancel the NG tube and basically all other things related to his feeding changes for 48 hours. He still has a NJ tube (nasal to duod..?) to get food past his stomach as this point and they feed him milk and supplement continuously through a syringe.

Instead they gave him some medicine to get the things flowing the correct way and they will monitor it for two days. They will attempt the NG tube on Wednesday/Thursday and try it for two days. If he still has reflux and/or aspiration, they will probably pull his feeding tubes and insert a G-Tube which is a feeding tube through the abdominal wall to the stomach. He'll be fed that way for a while and they can focus on the liver and breathing.

The docs are still performing tests on his liver. His conjugated bilirubin is still increasing but at a small rate. This is the kind of bilirubin that is not treated with light. It measured 6.4 on 4/17 and 6.6 on 4/19. That is high they tell us. By the way, bilirubin levels reflect the balance between production and excretion. Thus, there is no "normal" level of bilirubin. In other words, Carter's production from his liver appears low so they are out of balance thus the bilirubin is high. He is on Actigal which should help this or get the liver in gear.

They are testing for Parvo virus and other tests, some of which test for unknown viruses that could cause hepatitis. Hepatitis means "injury of the liver". Hepatitis is acute when it lasts less than 6 months and chronic when it persists longer and is generally caused by a virus. He did test positive for Epstein-Barr virus antibodies (aka Mono). They say he either created the antibodies on his own or got them from Kristi. These antibodies are one of the few that can cross the placenta and they seem to really want to know where he picked up the antibodies. (These are the antibodies and not the virus.) They are running a couple more tests and if they can't confirm he got them himself, then Kristi will have lab work to see if she has them and passed them to Carter. (Kristi passing them to Carter is a likely scenario.)

Also, he is gaining some weight but if you compared today's weight with his weight 7 days ago, he is up only 20 grams or .04 lbs (whatever that converts to in oz) If compared over the past three days, he is up due to the enhanced feeding as posted in a previous e-mail.

Also, his oxygen remains unchanged at 3 litres per minute at between 21% to 28%. He is not able to get enough oxygen for his body at a 21% rate at this point. 21% is the oxygen content of the atmosphere. They had it at 28% all day today.

Finally, it seems the liver is their priority with the breathing rate a high second. We think that by this weekend he may likely have a G-tube for a while so that can focus on these other issues.

We appreciate your love, concern and support. We couldn't do it without your thoughts and prayers.

Love,
Alan & Kristi