We had Kajsa’s nephrology appointment today. Her labs were great! We’ve been working hard to try to give her
all of her shots. It’s so heartbreaking
that we occasionally skip days. Unfortunately, the nurse can always tell. She was quite happy with us today, though.
Until, that is, I showed her Kajsa’s paperwork. Her blood pressure has been horribly low, of all things. Part of this is due to the fact that she has
been vomiting several (6-8) times a night for the past two weeks. Add dialysis to this, and she’s just super
So we’re skipping dialysis tonight and changing her
therapy for a while as well as making adjustments to her nightly feed. It’s always a juggling act with this kid.
Another thing that we discussed at the meeting today,
is what appears to be the next Borg style implant for our dear bionic
baby. Due to the fact that it has become
increasingly difficult to draw her blood, we are now tentatively planning for
the placement of a portacath. You may
have heard of this device from friends who’ve had chemotherapy. Kajsa; however, would not be receiving meds
through this. It would be solely for her
blood tests. And considering how many of
these she’ll be having in the weeks following transplant, I can’t help but
think that this might be a good thing.
Now don’t get me wrong. I’m not resigned to just accept anything that
the doc’s recommend. But, honestly, I’m
so tired of watching her scream in terror whenever we go to the lab. It’s enough to stab her every night in
private. So, yes…I think we’ll take
I still have some research to do about sepsis and
such. I’ll let you know what I find
out. Meanwhile here’s a brief
Definition: (1) An implanted device
through which blood may be withdrawn and infusions given
without repeated needle sticks. A subcutaneous port
is one surgically placed under the skin. It consists of an artificial septum, a self-sealing rubber material,
which the needle can pierce, and a catheter, that is
placed in a blood
vessel,, usually a vein, frequently in the upper chest, just below the
I’ve also included two graphics.
The other is a photo I found from a Swedish
study. It is NOT a photo of Kajsa. This image shows an IV connected to the
child’s port, as well as a MicKey G-tube. This is the same type of feeding tube that Kajsa uses for her nightly
feed. The only thing this kid doesn’t
share with Kajsa is the dialysis catheter. Kajsa’s comes out just medial of the G-tube, and wraps up into a special
belt that we had made for her.
Fascinating stuff, eh?
was your day?