Oh, liver!

My communication has been patchy at best over the last week or so but if you have been keeping up, well done. If not, or for new readers, I have been concerned about Henry's liver. Charlie and Henry both have had TPN-associated cholestasis, or liver disease caused by getting their nutrition intra-venously. Omegaven is part of what they get and it works as a treatment for the liver as well as providing calories. However, because it is not FDA approved, the boys had to have signs of liver failure before they were allowed to get it. One of the ways of measuring liver function is to measure conjugated bilirubin and it was elevated levels in the conjugated bilirubin that were the marker to be allowed the Omegaven treatment. Charlie's level got above the threshold first and the Omegaven did as promised and he has been scoring 0 for weeks now (i.e. no liver disease). As I mentioned, Henry's number went up unexpectedly last Monday after 8 weeks of being on Omegaven and it upset me. What I struggled to get around to explaining last week was that the other way of treating babies with TPN-associated liver problems (apart from the non-approved Omegaven) is to move, as soon as possible, from parenteral nutrition to enteral nutrition (nutrition through the more traditional method of mouth-stomach-intestines-poop!). So, for Henry, this means surgery. 

However, the surgeon wants to wait so that the intestines have more time to grow and heal. 

This was last week's issue. If the liver isn't getting better on Omegaven or, worse, is getting worse, is it better to wait and risk the liver than go early and risk the intestines? Last night I talked about worrying that waiting was doing more harm than good. 

This morning, we are up again (from 1.8 to 3.8 in case anyone knows the numbers. 2 was the Omegaven threshold). Cue Fitzpatrick family tailspin. 

However, I can report tonight that we are calm. Conjugated bilirubin isn't the only liver test in town so Henry got a PT and a PTT. You will all be relieved to hear that he has an INR of 1.3. My interpretation of this is that, although his liver isn't cured, it is still doing its job sufficiently at the moment. We will take sufficient at the moment. The surgeon wants to wait until March 24. Maybe next week his Billy will go down...

At this point I feel I should write a separate post called Regarding Charlie. This is a huge week for young Charles George Fitzpatrick. He has surgery tomorrow (Tuesday) morning. This surgery will reconnect his stomach and his butt. Reunited!  I'm being light hearted but it is very worrying. It is a big surgery for a little boy. However, it is a really big step in the direction that we really want him to be stepping. Frankly, the boys need to eat, shit and breathe before they leave the hospital. Reuniting is important. 

Charlie un-swaddled his arm to say hi. 

I think I may be asked to pray again tomorrow. In case it isn't very obvious, that's not my thing. However, I really don't want the surgeon worrying about my immortal soul, so I am all set for another chat with his Heavenly Father. I really have no issue with asking everyone, heavenly or not, to give strength to Charlie and his surgeon. 

(D)