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!
I'm so happy to see that smile! <3
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