Some Updates and the End of Delayed Intensification

Well, Dalynn pointed out the other night that I haven't uploaded any pictures since, well, November. So, I went through about 3 months worth of pictures today and uploaded some of the best. They can be found here.

I hope you enjoy them, there are quite a few of Logan, and more than a few movies. No captions, sorry, but I think the pictures will speak for themselves.

Let's see, what else? Well, Cole is doing well, and yesterday we finished with delayed intensification! That's huge news.

I got to take Cole to his clinic visit yesterday and we had a good time despite his being cranky. And I mean C-R-A-N-K-Y... Still, once he got some mac-n-cheese in him, he perked right up (and after we got the needle sticking through).

Sticking is something Dalynn and I are considering deeply right now. Currently Cole doesn't have a line in. That means that there is no line maintenance (we had to flush both ports on his CVL every day when he had it). That also means we can bathe him as we see fit, and don't have to worry about dressing changes afterwards.

The down side is that he has to get stuck every clinic visit so that they can check his counts and if he needs some kind of medicine or blood they have to start an IV. Believe me when I tell you that the blood draw is bad enough, and the IV sticking (which uses a much larger needle) is down-right terrible.

Ideally, they could fit him with a port-a-cath. But, if you remember, they tried that before and couldn't get it in due to Cole having a blood clot at his "junction". That's the place just outside your heart where your two major veins/arteries come together and go into your heart. The clot is there from his first line, his PICC, and due to it they couldn't thread the catheter in for the port-a-cath.

In case you don't remember, and why should you (I have a hard enough time keeping all this straight, and I'm involved...), a port-a-cath is a permanent line that actually resides just under the skin. It is less prone to infection and doesn't have to be handled in any special manner. It's the Cadillac of lines.

To access it they use a right angle needle and just push it through the skin that is right over the port. They can numb that skin with a topical pain killer so that the patient doesn't even really feel it. The only thing they can't do is draw blood off of it. So, even if he had a port, they'd still have to stick him to draw blood.

But, that's all assuming they could actually get the port, or any other type of line, in past his clot. Once the line is in, there's always the chance of infection, too. Installing any major type of line is a major surgery, too.

So, do we continue to try to get our 2 year old son used to being stuck on a regular basis, or do we try for another risky and potentially unsuccessful surgery?

It's a tough decision. The best thing that could happen is that his clot would dissolve, and then we could easily get a port in, even if that would mean another surgery (and more scars)...