Sunday Morning

Most Sunday mornings you will find me in church…but not today.  My husband and I were not able to access "Christian's" port on Saturday evening and when we spoke to the doctor on call, we decided to skip his dose of FEIBA.  He was not bleeding and not in a critical situation so I planned on taking him to the emergency room the next morning to get an IV started.  His port was aggravated and with his history of difficult access with #5, we thought it best to give it a break.

In my fairytale mind I was thinking we would walk in, get a line started and make it back in time for Sunday School, or at least the second service.  (It's never been that easy before, but there is always a first time….right? I was just trying to be positive.)

Two attempts were unsuccessful and the third attempt was made by the "Ultrasound Squad".   You know, the ones who come in with the ultrasound machine to find the veins that are deep.  They use the ultrasound machines for people with difficult veins, elderly folks whose veins are very fragile and kids like Christian who are just hard sticks.

Fortunately they were successful and my son has an IV for the next few days until we can meet with the surgeon to figure out what can be done to get #5 in the right place.  I am hoping it is a matter of going in to suture the port more securely….or something like that.

When my Christian is in the hospital setting and a needle comes his way, his PTSD is raging.  He can get to the point of being still but his fear sends him out of his mind and he screams and cries unlike anything I've ever heard. 

Sometimes I am in the room, other times I am right outside the door and most times you won't see a tear on my face.  I walk away from these times wondering how in the world I can be devoid of feeling?

Truth is, my feelings are there.  I am devastated, sad, angry…every emotion in existence is flowing through my being but my son needs his factor and the only way to administer it is through a vein.

If you are watching a parent endure something awful with their child and you don't "see" what you expect, keep in mind that you never know what is going on inside.

That parent may not be shedding a tear because they are screaming prayers in their heart and mind to the One they believe can bring peace.

Perhaps that parent has been up for hours on end and is so exhausted that they can hardly stand up.

Maybe that parent is worried about their other children or loved ones at home while they are on "hospital duty" and are on their last day of paid leave from work…or are looking forward to getting back to work to "rest".

What they have been through is probably more than you will ever experience in your lifetime.

On this Sunday evening I am sending out my good thoughts, energies, and prayers to those families in the hospital with their children.  They sit and watch as they are not able to take away the pain and do what they can…love.

Tangible

When you can touch something it's real and reassuring.

Not everything is tangible, but it is nice when it is. 

Children who are in and out of the hospital with chronic illnesses only know their illness as a way of life.  What most of us know to be true is that illness is not "normal".

I struggle with explaining  to my "Christian" why he has hemophilia when he tells me he hates hemophilia.  There is not a good answer.  God didn't "give" him hemophilia, it wasn't bad luck, he wasn't a bad boy…..it just is.  And I continue to tell my beautiful son that he just wouldn't be "Christian" if he didn't have hemophilia and that I love him exactly the way he is.

I would love for him to not have the bleeding disorder, but it is my responsibility to help him have an empowered life, hemophilia or not.

A few years ago at our hospital (University of New Mexico Children's) they began to participate in the Beads of Courage program.  It is a program that is found in many hospitals across the country that gives children beads for every procedure, milestone and event in their medical history.  It provides a tangible piece to their journey.  The Beads of Courage program hosted a nationwide event on Saturday, September 20th and my son was looking forward to watching the glassblowers make the beads that he treasures.  He was even able to request his "dream bead"….a Lego bead. 

Since he was in the hospital during the event, I stopped by to pick up his bead. 

 

It was specially wrapped with his name and the name of the designer…Nan Charif of Tucson, Arizona.

Oh my goodness….for my son, who had an extremely rough week in the hospital to open a special package with his dream bead was just priceless!

 

This completely warmed my heart today.  Maybe the beads are more for me than my son.  I know that what my son deals with is more than most people will ever endure in a lifetime, and he is only eight years old.  Part of me hopes that he doesn't remember everything in as vivid of detail as I do.  But I want him to know that what he has endured has been beyond limits.  That he has a strength in him that many people only dream to have. 

 

He is one of the bravest people I know.

 

 

 

 

 

In An Instant

My sweet "Christian" was admitted to the hospital Sunday night because his Dad and I just could not access his port.  The next couple of days were filled with IV's and a port that had a nasty rash on the outside.  Last night the IV infiltrated the muscle in is upper arm.  It was pretty awful.  It was painful, swollen and needed pretty constant monitoring throughout the night.  It is healing well, but still a source of pain.

We had no other choice than to access his port. My husband I tried, the nurses tried…we had two people in the room then seven people and the strides we had made to helping his conquer his PTSD seem to have vanished within one difficult day.

Fortunately the surgeon who placed the last four ports came in and was finally able to access. 

The scariest part about this is not the screaming and tears and physical fighting that he does.  It's when we have no access into a vein and cannot get factor into his system, that we become a little panicked.  In an instant you can lose venous access and struggle to find a new site.

Just as we thought we may get to go home today my boy develops a fever.  Blood cultures have been drawn and now we wait.  Hopefully it is just a virus that has nothing to do with the port, but when you have a port, you have to assume the worst first.

I am so grateful for the "good run" of time without much incident.  But one thing I know for definite sure is that it could always be worse.

 

Another good month

To battle my "Christian's" allergy to factor VIII, we are slowly increasing his dosage each month (in addition to 300 mgs. of Xolair every other week).

Yesterday was another big day….he tolerated 750 units of factor VIII!  It sure is a slow process, but things are going great:)

He looks great, is having a fantastic start to the school year and is just as happy as any little boy could be.  When I ask him what he like the most about 3rd grade he simply says, "Everything."  That does a mama's heart good.

I am so grateful that things are going well.  The truth is, things can always be worse.  That goes for all of us….bleeding disorder or not!

Here's what I know for sure today:

• I am not going to live in fear of the next bleed. 

• I am not going to "What If?" myself into being sick.

• I am choosing to take the good times and enjoy them and be right alongside my family (and not feel guilty about it).

I hope that you are experiencing a good season right now.  And if you aren't….it will get better. 

 

Hang in there.

 

"Christian" 2.0

In the world of inhibitors it is easy to get fixated on numbers.  Inhibitor levels are measured in BethesdaUnits (titers) and it is just about everyone's wish to be below 10.  This is the level where most doctors target to get in order to start Immune Tolerance Therapy.

But titers go up and down as fast as the wind changes sometimes.  We are always told to look at the big picture and not get too excited when numbers are low.  Our hope as parents is for the inhibitor to register as ZERO! Wouldn't it be fantastic to be at ZERO and only need factor VIII like a "regular person with hemophilia"? 

It sounds crazy but if you living with an inhibitor the dream to "only" have hemophilia is very real.

My "Christian" was diagnosed with an inhibitor when he was 11 months of age and his titer registered over 2,200.  I never knew the numbers went that high.  And here we are in his eighth year still living with an inhibitor and as an added "bonus" an allergy to factor VIII.

And today I am celebrating the number. 

 

The number that shows us where we are at in the battle, at least for today.

2.0

"Are you kidding me?" I gasped as I heard the result over the phone.  I think time stopped for a moment because I had not dreamed his level would ever get to this point.  It just didn't seem possible.

For the years of pain, joint bleeds, hospitalizations, anxiety, fear, missed school and vacations, PTSD and hating hemophilia, my Christian is having a good season.  A season of "normal" for him that involves walkers, wheelchairs, adaptive sports camp, a bent knee, hopping on one leg and a fifth port. 

It's not normal for most but we'll take it for the moment.

Hope is a good thing.  I have plenty of it.