We have had a busy and stressful past week. But one of the good parts was having a visit from another GV volunteer, Dan, who has worked with Raul in Romania as well (and volunteered with us on our first trip). It was great to see him again, and for Raul to have a visitor! We also had a party to mark one month in the U.S. for Raul yesterday!
Last week Raul was put under anesthesia twice; once for a brain MRI, and once for his PICC line to be placed. His brain MRI came back normal, which was great! His PICC line has been holding up well, and he has been getting TPN and lipids through it for his nutrition. He is still not eating much by mouth, and is drinking barely anything. Today the nutritionist told us that even the days we thought he did pretty well over the past week, he only got about 1/4-1/2 of the calories he needs!
As the TPN is not a good long term option for Raul, he will now be getting a g-tube placed. There was much debate about this within the medical teams, but today we had a care conference, and everyone agreed that it was the right thing to do. There are still options open as to whether he will go back to Romania with it, or if they will take it out. While he has the g-tube, he will also get extensive feeding therapy to get him to eat a bigger variety of things by mouth, and to get more nutrition that way. Right now he will only eat yogurt and baby fruits, and apparently too much dairy just worsens his anemia. They decided not to do a blood transfusion for his anemia, as had been discussed before, as hopefully it will improve once he gets the g-tube.
We are very happy with this outcome, as last week there had been some talk of putting him on hospice care, and not doing the g-tube. This is because there can be severe complications for EB kids, and they are not sure how it will be handled in Romania. However, it just did not make sense to starve him to death to avoid complications that may happen years down the road, and everyone finally agreed on that! We are glad that Raul will be given this opportunity for better nutrition that most EB kids in the U.S. get!
Raul has still been spiking fevers intermittantly, and they cannot do the surgery until that is under control. His highest has been about 104. He is being treated with Bactrum right now, but they may switch it to Vancomycin if it doesn't stay down soon, as they want the surgery as soon as possible now that it's decided that he should have it!
He has also been doing some good work with PT/OT/speech. They have been coming in a few times a week each to work with him and help with his developmental delays. Improving in these areas will help him a lot for when he goes back to Romania! Everyone agrees that he is bright, he just needs some extra help afer being institutionalized. Raul is definitely a charmer, and many people here are falling in love with him just as many volunteers did in Romania!