Still improving

Peter still gets weekly labs, but his PICC line makes it painless for him. I always spend the rest of the day fretting about what the numbers will be. Usually hemoglobin is the main worry, as he continues to have bleeds from the fistula off and on. When his hemoglobin gets down to 7.0 or so he needs to get another blood transfusion.

This week the worry was more about what the other numbers would be, since last week's hemoglobin was 9.0 and he usually doesn't drop down to 7 within a week. Last week he showed us that he was holding onto fluid and that threw his albumin and sodium off, and he had some fluid building up in his legs. It seems that his fistula is not putting out as much fluid lately... which is a good sign, but in return we ended up needing to decrease the amount of replacement fluid we've been giving him.

The results of this week's labs are back. This week we seem more balanced in the fluid department and albumin is back up to 2.4 (still low, but better than 2.0) and sodium is normal. Direct bili stayed at 1.2 this week, as it did last week, and the total bili went up to 2.1 from 1.9. The discussion is whether this is due to addition of plain yogurt or not. We have been giving small amounts of milk as desired for months and thought the yogurt would also be alright, but we are going to cut it back from 3 to 5 tsp daily to just 1 tsp daily. Hopefully the bili's will continue to go downward consistently as they had been. Dr. Puder reminds us to be patient and not change things enterally until the direct bili gets to around 0.4.

The hemoglobin this week is 8.4, so if we can keep bleeds at bay, maybe we can avoid transfusing during Christmas week too. The fistula bleeds so much due to irritation and due to clotting ability still not being normal. That should improve as the liver improves. We are also experimenting with different ostomy products with the help of Children's Boston wound care nurse and some of our own trial and error. The fact that Peter is able to keep any ostomy appliance on his abdomen at all is quite remarkable - a good advertisement for the Convatec company indeed. He just folds himself right in half when he wants to get onto his tummy, and that is exactly where the fistula and that one ostomy appliance are. (He has two other ostomy bags too, but they don't get quite as taxed as they are more off to the sides.)

Peter knows his entire alphabet at age two and one month. He still doesn't talk, but you can ask him any letter and he'll find it. He learned the letters in about 3 months. Dr. Puder says the Omegaven babies seem to be very bright. I don't know if it is the Omegaven or the one-on-one care that he gets with home nursing. Regardless, knowing the alphabet at an early two years of age is definitely worth bragging about, even if Peter isn't walking or talking yet!

And though I don't write about it in every post, I never forget that the true source of all of Peter's progress, and our strength, is our good Lord. God is good and we are ever grateful. Merry Christmas to all of you who take the time to keep up with Peter's news.