Sunday, June 22, 2014


Four incisions and a week later and  port #5 is healing beautifully :)

"Christian" developed a clot that has essentially become part of his body.  The surgeons tried to break it up and it just won't budge.  Because of this issue the port had to be placed in a place we had not expected, his lower abdomen.

The surgery lasted much longer than we anticipated (which was very nerve wracking) but all is well.

He even seems to like the port in this new area.

We'll know more this week as we access it for the first time on our own.

These things don't get easier, but what I know for sure is that you have to be positive and pray for the best. 

And when you are on the other side of a stressful, scary situation that completely freaks you start to breathe again.

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Thursday, June 12, 2014

#5 Coming Soon

I had trouble accessing "Christian's" port last week (while his Dad was out of town).  What started as needing help accessing turned into a dye study to check placement and we learned that the port had coiled and developed a clot.

I am glad it worked out the way it did without the port completely shutting down but I sure didn't expect to hear this kind of news.

Port #5 is scheduled to be placed on Monday, June 16th.  My son will be admitted the day before and hopefully will not endure excessive bleeding.  I know this needs to be done and am not "worried"….at least not yet.

At one point we were unsure as to whether or not to place a new port (when the time came) or have a Broviac placed.  My Christian suffers from PTSD and accessing is a challenge.  The past couple of months have been a huge improvement as we have worked with him with a play therapist and simply found that we have to take plenty of extra time with him while accessing.  He needs some control during the process and gives us the "thumbs up" when he is ready for the needle to come into view.

The funny thing is that I don't know if we have ever known ahead of time that we were going into the hospital for an admission.  My family can truly be considered experts when it comes down to gathering items together at a moment's notice to get to the hospital, but knowing ahead of time and being able to plan and prepare is new.  It's a different perspective.

I have my list of questions for the surgeon as well as my suggestions for treatment regarding factor and ultimately I know that this is the best move for my son.

Knowing it's the best move doesn't make it any easier.

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