Thursday, June 6, 2013

Solving the access problem!

We made a huge step forward in Jax cares and well being last week!

Jax is finally getting a port!!!

A port is a central line, surgically implanted totally underneath the skin. Its basically the same thing as a PICC line, but you can't see it if its not being accessed! I've been bugging doctors for years about putting a port in Jax. Every time I was brushed off. After a stint in the ER with Jax last week, his potassium came back dangerously low. The IV that they had finally managed to get after 3 pokes had already blown. We were stuck between a rock and a hard place. A bag of IV potassium ready, and no place to actually get it into Jax body! The ER team was in a bit of a panic! 
That was the final straw for me! I do not want to get in a place where Jax was very sick, and they were unable to gain access! So at Jax surgery follow up, I asked his surgeon about a port. Have I every mentioned I love Jax surgeon?? He knows that moms know best, he told a nurse in post op to make sure she listens to me, because I'll spot a problem much faster than them. But he agreed that we were playing with fire not having an access point in Jax. Of course he goes into a story of another chronic child that they couldn't get an IV in and surgery had to come down and try and find central access. He was ready right then to schedule an appointment to have one placed. I told him that ENT was wanting to do some airway surgery, so as soon as I hear from ENT, they are going to coordinate the two things together. This is a huge weight off my shoulders. HUGE! 

If you've never seen a port, here is a picture. Not all ports are as easily seen as this one. 

Jax can't go in his chest or arms, but his surgeon is confident he can find a place to put it. It may even go in his abdomen, if we can find someplace, his abdomen is a bit crowded!
One quick poke into the round part, and your automatically into central access! You tape it down and it looks just like a PICC line from the outside!

This placement can't come fast enough, after today again poking and poking and getting nothing at a lab draw!
Whatever can make Jax life easier, we'll gladly take it!


Scrappy quilter said...

Lacey your precious boy is sure growing. I love the pictures you share of him. Hugs

Debbie said...

Some times they place them in the leg. My daughter's is almost as visible as that one.

Simply, Sarah said...

When they access the port, make sure to use the EMLA cream on it before. And if Jax is sensitive to tegaderm (to hold the cream on), you can use Glad Press 'n Seal to hold it.
I know you will, but make sure you watch like a hawk EVERY time they access Jax. One dirty access and it's risky for life-threatening infection.