Relief

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 out...you start to breathe again.

#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.

Happy Birthday

 

 

May 22, 1962

 

I don't know what life would have been like if my brother had lived.

Would he have been annoyed with a little sister following him wherever he went?

I like to think he could have whipped up a mean peanut butter sandwich and taken me out for ice cream on a hot afternoon. 

Maybe he would have had a passion for music like I do?

I like to think he would have come to my band concerts and after a halftime show on a Friday night have patted me on the back and said, "Nice job!" 

And when my sons were born I imagine he would have been at the hospital making sure that I was okay and would have been one of the first to love on his new nephews .... and later given me a shoulder to cry on when they were diagnosed with hemophilia.

I have a picture of him in my mind as a strong, healthy man who did everything he could to live with hemophilia even with treatment that was not the best.

The few that knew him are not around anymore and his legacy could easily fade away, but today I can say that I proudly say “Ronaldo Julian Campos was born 52 years ago today...he was my brother."

Today I Am Thankful For:

1. foil
2. cake mix
3. old bananas
4. crooked lampshades
5. birthdays

A Birds Eye View

I don't think mos people would say that they like to be stuck with needles on a regular basis.  I have heard stories of big, manly, tattooed men on the brink of tears when a needle approaches.......(To read the rest of this post visit http://www.hemophiliafed.org/news-stories/moms-blog/.

The Day Has Arrived

 

Thursday, April 17, 2014 is the day our family has been waiting for and working towards for months.  It is the day that our mighty warrior "Christian" receives his first dose of Xolair, a relatively new injectable drug that is used to treat moderate to severe asthma.  My son does not have asthma, but has developed an allergy to Factor VIII, the clotting factor his body does not produce.  Allergies to Factor VIII are not as common as allergies to Factor IX and this has been the problem.  There are not many cases that have been studied and successfully treated.

Our hematologists and allergist in New Mexico and Colorado have been working tirelessly to get the drug approved through our insurance and it finally happened. 

What if he has an allergic reaction to the Xolair?

What if after his second dose in May he is still not able to tolerate Factor VII?

What if we never try the Xolair and it actually works?

I have no idea what is going to happen and I am not going to expect the worse...only the best.