Tuesday, April 12, 2016

Day +189

Well my last post was about Raul's improvement in his throat, which has been our best recent news! He is still having some old blood coming out his g-tube, but I think some is from his mouth as he has an area we have seen bleeding at the back of his mouth. We did give a dose of the clotting medication tonight just to be safe with the mouth bleeding, but it is not bleeding heavily. His antibiotic for his throat ulcers finished yesterday as well. 

Yesterday Raul had a CT scan as he has continued to have fairly constant high fevers. We looked at his sinuses, chest, abdomen, and pelvis. They found what looked to be some pneumonia in his right middle lobe, so we added a course of azithromycin for that. This doesn't explain any long term issues, but may help explain some of his most recent fevers/discomfort. Tomorrow we will be doing a bone scan of his whole body to check for bone infections. A PET scan had been recommended to look for infection throughout the body, but was not a good option for him due to his kidney failure, so we did the CTs and bone scan instead. When you have kidney failure, any test that requires contrast could finish off whatever remaining kidney function you have left, so isn't a good option.

We have been switching over many of Raul's IV meds. to J-tube versions, and today were actually able to remove one of his PICC lines! His line from November was no longer central, so they said it would be more risky to leave it in (clots, infection, etc.), than to have to place another line in the future if it were needed. It is so nice to only have him hooked up on one side now! First time in almost two months! Really his only meds. left that could be switched over from IV are his sedative/pain medications. We are also back up to full feeds! He is getting a new renal formula, so his goal amount was lowered and it will be better for his kidneys.

Raul had a long bout of agitation Saturday evening, but has not had a really bad night since. He has had discomfort, especially with the high fevers, but not full on freak outs. He is also coughing a lot, so that keeps us up some, but it is good as he has a lot of junk in his lungs and throat! The past several days Raul has seemed pretty out of it during the day, so today we went down on his ketamine dose, and he did stay more awake. We will be working on weaning both the ketamine and fentanyl as he tolerates.

On the day of his last respiratory arrest Raul had been given a stroller by a wonderful local family with several children with special needs. He finally got to go in it for the first time three days ago, and loves it! He looks really comfortable in it, and has spent long periods of time sitting in it each afternoon. We are hoping to take it outside soon as the weather is supposed to be warming up. It tilts, which is really nice, and also has tie downs so it can be used in the car.

Our most confusing news came last Friday afternoon. We had been asking the team to consult Cincinnati, as they are the top research hospital for HLH. Well that happened Friday, and that team wasn't completely convinced Raul even has HLH! He still may, as he does meet all the criteria, but they wanted some other things looked into as well. They had made suggestions on testing for infections, as that would cause his inflammatory markers to be high like HLH. They also suggested looking into the TMA/TTP/aHUS category of issues again, so we have sent of more blood work. A kidney biopsy was discussed as it can be helpful for some of these diagnoses, but he is too high a bleeding risk for that to be worth it, as we could treat without it. Tomorrow we should get more of his HLH and TMA/TTP/aHUS lab results back. The potential change in diagnosis does not make him any less sick/fragile, but it does mean we could possibly find something more treatable than the HLH.

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