Day +125

Despite everything going on, Raul has been feeling better and acting much more like himself recently. He has been sitting up all day, in and out bed, and wanting to go on stroller rides every day. We have been exploring the hospital, and also going outside to play in the snow. Raul also started eating yogurt again yesterday, and is wanting to eat it constantly! (probably because of the steroids)

Raul needed dialysis daily for 8 days, and finally got a day off yesterday (but we had to seriously restrict his fluids over the weekend to get that day off). At first his BUN was okay, but his weight was getting super high. Now his weight is a bit better, but his BUN is getting quite high again. So we are hoping not to have to do every day this week, but we will see. It may be that the chemo for the HLH is worsening his kidneys again, but there was not an alternative medicine that could be given in any case. 

We got some of Raul's HLH-related labs back and unfortunately some have gotten elevated again, but in talking to the doctors it sounds like some up and down is normal. His Ferritin is up to 21k, and his triglycerides are back up to the 500s. However, his LDH and Fibrinogen are both still improving, which is good. We hope to get his soluble IL2 level back mid-week. He is now only getting the chemo once a week, which is good, as after the last dose his counts dropped significantly, so we are hoping this will improve when he is not getting the chemo as often. He is now needing GCSF daily for his low counts, and he has gotten some mucositis again. 

Today we had a care conference to go over longer term plans as well as discuss transitioning home. He will have scopes done soon by ENT to check his nose after the last bad bleed, and GI to check for any strictures as he is starting to have some early signs that he may have one. We will also repeat his chest CT later this month, though he is not symptomatic with any respiratory issues at this point.

We are also planning to switch from hemodialysis to peritoneal dialysis before going home. As of today, the plan is to work towards having the new catheter placed in about three weeks. After that we have to wait several weeks before we can actually use the catheter, so he will continue with HD during that time and I will get training on doing the PD. PD is done every night at home, and would save us from having to spend long days in an outpatient dialysis center at home. He would instead be able to spend his days doing normal kid things, and just have dialysis for about 12 hours each night.

As of now, Raul will stay inpatient at least through getting the PD catheter placed. Then for the weeks following that he could be inpatient or outpatient, before needing to be inpatient for a couple nights when we first start doing PD. He is not quite ready to be outpatient yet, as he is still having some fevers, and still requiring many blood products. The plan is to try being outpatient here first, probably for a couple weeks, and then hopefully transfer home as an outpatient. We are hoping to avoid a hospital to hospital transfer at this point. 

So while there is a lot going on, the best news is that Raul is feeling much more like himself!