As you can probably tell from the photos, Raul is more jaundiced. His bilirubin was up to 12.5 yesterday. It may be related to the aHUS, but we are hoping it will improve once we get him off the TPN. His formula is now up to 35 ml/hr, so we are making progress thanks to the GJ tube! He is still throwing up even though we are venting the G portion of his tube, but at least he isn't throwing up his formula or meds. anymore. We also started him on a medication to help his motility from his stomach. Thankfully, his diarrhea has only increased a little even with the formula and the motility medication!
This past week he has gotten two blood transfusions, and three platelet transfusions. This is still a lot, but much better than it had been for a while! I believe we are going to start giving him EPO to help cut down on the blood transfusions, as when you have kidney failure the kidneys do not make it (or do not make enough) on their own. Raul hasn't needed GCSF in a week, which is great! His counts came back as we had hoped when we stopped a few of his antivirals, so now we are going to start one back to help keep down his BK virus levels. Raul's weight was up .8kg today, which was his highest weight since starting dialysis, but we were able to pull all the excess weight off during dialysis.
Raul has been pretty happy and talkative the past couple days, particularly in the morning. It is great to see him act more like himself during these times! He also has been having fewer fevers, which has been amazing, as the high fevers really make him feel crummy. He had a true fever Thursday at 4pm, then not until Friday at 4pm, and then today around 2pm. And thankfully when he does have them they are now going down pretty quickly with the IV tylenol.
This past week he has gotten two blood transfusions, and three platelet transfusions. This is still a lot, but much better than it had been for a while! I believe we are going to start giving him EPO to help cut down on the blood transfusions, as when you have kidney failure the kidneys do not make it (or do not make enough) on their own. Raul hasn't needed GCSF in a week, which is great! His counts came back as we had hoped when we stopped a few of his antivirals, so now we are going to start one back to help keep down his BK virus levels. Raul's weight was up .8kg today, which was his highest weight since starting dialysis, but we were able to pull all the excess weight off during dialysis.
Raul has been pretty happy and talkative the past couple days, particularly in the morning. It is great to see him act more like himself during these times! He also has been having fewer fevers, which has been amazing, as the high fevers really make him feel crummy. He had a true fever Thursday at 4pm, then not until Friday at 4pm, and then today around 2pm. And thankfully when he does have them they are now going down pretty quickly with the IV tylenol.
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