BIONIC BABY

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 dried out.

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 this one.

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 description.

Definition: (1) An implanted device through which blood may be withdrawn and infusions given without repeated needle sticks.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 collarbone.

I’ve also included two graphics.

 

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  The first shows the basic structure of a portacath.

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  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?

And how was your day?

Comments

[Shelli]

Oh, Rowan. I am hoping for the best for your little one. I have seen porta caths used on small children and they are saviors. In fact I have given chemo through one before. In the office...can you believe that?

Good luck and I hope that Kajsa is feeling better soon.

[Rowan]

Thank you Shelli for your warm encouragement. If you are trained to use one, yes, I can believe it. We had a loooong talk about who could and could not access porta caths. This is because, since we live so remotely, it may be difficult for us to find a trained nurse. Lab techs cannot do this. And that is where we have historically had her blood drawn.

Again, thanks for the reassurement and well wishes.