Leg clot resolving itself

A hematologist came in to talk with us about Riley's blood clot and swollen leg yesterday and it was much less swollen than it had been the previous three days. She said that the clot was likely being reabsorbed into his body. There is still a very small chance that the clot could break free and travel to his heart or brain. Therefore, he will need to continue on heparin therapy for at least a month. She said if Riley goes home before a month is up, he will need to get heparin shots once or twice a day to ensure that his blood continues to move freely and not clot so easily.

I also heard from one of the nurse practitioners that Dr. Karl is leaning towards aspirin therapy instead of coumadin as a long-term blood thinner for Riley. This would be wonderful because coumadin comes with a variety of problems. The biggest is that it is affected by how much Vitamin K you eat. As a result, users need to have weekly or biweekly blood tests so that the dose can be adjusted based on what you have eaten.

A decision regarding Riley's appetite has not been made. We are working very hard to get him to eat. Most of his calories are coming from high-calorie liquids like Enlive juice. It looks like a juice box, but each box has 300 calories and 10 grams of protein. Yesterday, he took in about 800 calories thanks to two of those juices mixed with Gatorade. He is not really interested in solid food at all, although he did eat quite a few bites of a mozzarella sandwich (thanks Helen!). Doctors are loosening up his fat restriction in an effort to get more nutrition in him without invasive measures.

We have also started talking with doctors about transplants. We don't want any surprises when we get to that place, so we are asking lots of questions now. Initial conversations indicate that Riley could be a candidate and that his asplenia does not preclude him from an organ (contrary to information we got when Riley was a baby). However, if two kids about the same size with the same blood type were both waiting for a heart, the organ will always go to the other kid because of the asplenia. The organ goes to the recipient with the best chance of giving the organ the longest life. His risk of infection is much greater because he doesn't have a spleen. As a result, we've long been told that he was more likely to die from an infection before his heart wears out and he needs a transplant. Well, it seems his Fontan reversal changes those odds.

Dr. Tarnoff stopped in this morning and Jack had an opportunity to talk with him. He said that within a year, Riley will likely need some kind of surgery. Presumably it would be done to bump up his oxygenation, but I'm not sure. When I have more details on what kind of surgery, I'll include an update here. Tarnoff seemed to think it made sense for us to start talking about a transplant. He estimated that Riley would need one within the next couple of years.

Finally, Riley continues to get albumen replacements and is also getting an intravenous immunoglobulin (IVIG) infusion.