Monday, March 10, 2014

Isaiah's Port

Can you believe it's been almost 2 weeks already since Isaiah had his port surgery?  We've had a number of questions about the port, from parents of OIers who are considering a port to friends who would like to know more about it, so I thought a dedicated post was in order.

Can you see that little raised bump on Isaiah's upper chest in the picture above?  It's just below his collar bone, which is below Isaiah's chin is in the picture; that's Isaiah's port.  I heard some professionals call it a Portacath.  It's completely under Isaiah's skin.  It's a circle, with a silicone top and has a tube that got surgically inserted into one of Isaiah's veins.  When the port is being accessed, they put the needle right into the silicone top.  It can be accessed hundreds of times before it'll wear out, which is great because we plan to access it many times.  (We're hoping Isaiah's lasts until he's at least 5 years old.)  

The picture above shows it with tape on top; it's accessed here.  Almost like an IV, but not nearly as scary for Isaiah.  Since Isaiah's bones are so fragile, getting an IV in can be difficult.  We don't allow a tourniquet to be used as that may break the bone in the arm it's squeezing, so an IV team had to be called in the past and it usually involved flashlights and some luck.  Last time Isaiah got an IV it took 3 sticks before it was in.  It was awful.

We didn't want Isaiah to associate PAM with such pain and fear.  We didn't want him dreading getting his treatments.  The port, although he still feels the stick of the needle through his skin, makes it much easier for him.  

Besides using the port to get his Pam, nurses can also use it to do blood draws.  They always test Isaiah's blood levels for all different tests.  Isaiah didn't even blink when they pulled blood at this last Pam treatment.  Thank goodness for no more heel sticks and pain!

We love that the port is completely under Isaiah's skin.  Another option that we had for Isaiah was to get a Broviac.  Surgery to put in a Broviac is a lot less invasive, and is put into a central vein in the neck, chest, or groin area.  

Here's an image of drawing that I found through a google search from another blog:


There are benefits to a Broviac, but in our case, all we saw were the negatives.  You can't submerge it under water so that means no baths and no water therapy (which is in our near future since he's weaning off of the c-pap, darn it, Isaiah has waited long enough!).

We've also heard horror stories about Broviacs.  Kids pull them out.  They can get infected.  Infections can definitely happen with ports as well, but we've heard of more first hand experience with Broviacs getting infections than ports.  The worst we heard about a port thus far was that one moved and had to be surgically fixed back into place.    

Isaiah's port does have to be flushed with heparin every 4 weeks, but that's the only maintenance we need to worry about.  Day Medicine at DuPont can take care of that every other month when Isaiah goes in for Pam, so now we just need to figure out the plan for that.  I'm hoping one of our night nurses can do it; we have the clinical nurse from that nursing service stopping in to see the port tomorrow and let us know if that can be done by them.  We shall see!

So all in all, we're extremely happy we decided on the port.  It should make the next few years of Pam a lot less scary for Isaiah. 

To go off topic, I wanted to update on Isaiah's weaning off of his c-pap.  He's doing extremely well.  We are increasing the amount of time he is off of the Trilogy by 15 minutes every 2 days.  He's already up to an hour and a half twice a day.  His oxygen sits at 97-100% the entire time!  He's doing great.  He'll likely be completely off if for the entire day time by the end of this week.  

Those socks are crazy huge still, but who can resist the frogs?

When he's on his c-pap, he used to have oxygen bleeding into it.  Well, since his surgery, Isaiah's been on room air only- no oxygen needed!  The house is so quiet without the concentrator pumping out oxygen into his c-pap, but he doesn't need it, so why not save some money on our electric bill, right?  

We're extremely proud of Isaiah.  He's doing a great job showing us how strong he is.  He's showing us how ready he is to be tube-free.  


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