Superheroes

The idea of a "superhero" is that they do things that most normal people cannot do.  They have super strength, x-ray vision, speed, determination...

My "Christian" is a superhero. 

As I write this he is lying asleep in his hospital room...a deep sleep because of the pain medications he is taking.  He has a hand that is black and blue and looks as if a truck rolled over it and a knee swollen to at least twice the size of his "good" knee.

He hurts.  He has pain I cannot begin to imagine.

He has endured more pain and trauma than many adults and he is seven years old.  He is not able to run well, needs a wheelchair to get down the hall at school (or risk starting a new bleed) and he has been poked by needles hundreds of times.

Despite all of the "yuck," he always seems to have a smile on his face.

He defines strength.  He defines love.  He is my superhero.

Our children with bleeding disorders are special.  For some reason they have this condition to live with...we will never understand "Why" and we will never be able to take it away.  All we can do as parents and caregivers is love them, advocate for them and ooze compassion and understanding as they struggle.  We need to help them struggle well.

So Incredibly Disappointing

Even since "Christian" was diagnosed with an inhibitor back in December of 2006, we have waited for the Bethesda units to drop low enough to start Immune Tolerance Therapy to eradicate the inhibitor. On March 8, 2013, we were going to finally start!

 

Our entire family was thrilled beyond belief that this day had come. Christian and I changed our travel (as we are in Denver for his HTC appointment) and were admitted to the Children's Hospital in Denver. Friday was the day. We knew that the possibility of a reaction was a concern so the doctor had Christian admitted mainly for observation.

 

The infusion of Advate caused a reaction. Christian began itching uncontrollably and broke out into hives on his upper body. So Advate was out of the question. Saturday would bring an infusion of Alphanate. This was going to work, I just knew it! I'd heard nothing but positive, did some homework and was ready for this to be the answer.

 

His reaction to the Alphanate was worse than the Advate. He broke out head to toe. It was a really severe reaction. He is feeling much better and we are being sent home Sunday (unfortunately we could only get a really late flight due to the weather in Denver) and will regroup with the HTC next week.

 

Nothing has been "easy" with Christian and his hemophilia. I guess I shouldn't be surprised that the road to getting rid of his inhibitor is going to be any different.

 

It's just more emotional and upsetting than I had ever imagined it would be. It's something I can't fix and want nothing more in the world than for my son to simply need Factor 8 to treat a bleed. The day will come...it's just going to be a while longer.

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Taking Back Control

Last night "Christian" and I were on my bed having a tickle fest. All of a sudden he rolled off the bed and on his way down, hit the corner of my glass topped nightstand right between his temple and eye. I shot straight up, grabbed him and knew infusing was top priority. My husband was unreachable, so I knew I had to access Christian's port....alone. Thankfully, big brother "Lance" was close to help Christian stay straight up in his seat. We had a pretty successful infusion. I had to maneuver the huber needle a bit, and hit bottom! It was a great feeling to take control of infusing again. I've let myself get out of the habit of infusing and have let my husband be the major "infuser" and boy was that a mistake. Simply because I became complacent. I was losing my skills and my nerve. Today Christian developed a headache, so off to the emergency room we went to get a CT scan. Thankfully all was clear. He is acting like his 6 year old self :) Accidents happen. When you least expect it. It's amazing that sometimes it takes a good jolt to knock you out of complacency. Fortunately all is well. Are you becoming complacent with your child's bleeding disorder? What can you do to reel it back in?

A Doozie

This ankle bleed has been one of the worst yet.  "Christian" has been on morphine every two hours today and with the half life of the morphine being so short, his pain goes away for a very brief time then he is moaning in pain until his next dose.

I hate that I can't take his pain away.

The swelling is not going down as much as I would like to see.  This blasted inhibitor does not make these things any easier.  I think tomorrow we need to talk about trying a dose of FEIBA. 

I just can't miss the funeral on Wednesday...but things are not looking like my little guy will be able to travel.

A lot can happen overnight.  I am trying to stay positive.

The Saga Continues

On Tuesday evening, the second IV blew.

It took six sticks/pokes to start a new IV. My "Christian" broke out because of nerves. He was so upset. I can't believe I had left. My husband was there to take over, and I hate to say it, but part of me was relieved I didn't see all of that. I had been with Christian on the previous Thursday when we access his old port several times and it was horrible.

Sometimes you have to rely on others to help. I don't know what I would do without my husband. How people survive as single parents is completely beyond me and single parents with children that have a chronic condition? I don't know if I could do it. I admire them for what they do.

Today Christian developed a bleed on the top of his foot from one of the IV tries. My husband tried to keep him calm, as calm as you can keep a five year old, so that the bleed would start to resolve.

The other good thing is that the nurse accessed the new port tonight! It's working great! And his inhibitor is down to 34!

I just hope that the bleed is under control so that he can come home tomorrow as scheduled.

It's been a rough week, but my Christian is one tough cookie.

Precautions

My "Christian" is doing very well. We have even move to every 12 hour factor infusions. His incision is healing and all looks great. The only problem is that he must keep an IV in until Friday. His veins are pretty torn up and traveling home, two hours away, poses some concern. In our little town we do not have a lot of back up with nursing and are afraid to depend on one person (the nurse that helps us out is not always available).

The team decided it was in our best interest to stay in the hospital until we can access the new port on Friday. I know it is the best decision, but it sure stinks to live in the hospital. I knew the minute we would leave and get home that the IV would blow and have to turn right around and come back.

All in the name of what is best for my son.

The Hardest Day Ever

My day with "Christian" looked like this…..

Left at 6:30 am for the Hemophilia Treatment Center (2 hour drive to Albuquerque)

9:00 am appointment

The hematologist accessed Christian's port and we thought all was well (I was not able to access it the night before and my husband is out of town…..I had no back up)

When the hematologist left the room, I mixed factor to infuse before we headed home….the port would not work.

Between me and the hematologist, we attempted to access the port at least 8 times. No luck.

The screaming was from deep down….Christian has an intense fear of needles. A boy with hemophilia that has a fear of needles is not an easy situation. I had to help hold him while the doctor was manipulating the port and every time I held time down, a piece of my heart broke. The shuddering took over his entire body...the tears flowing like a river. His cheeks were bright red, and there was nothing I could do to take away the pain.

The x-ray showed the port at a severe angle and we thought we had it figured out.

No luck.

An IV was started, because we had to get factor in Christian. He has a high titer inhibitor and needed to be infused.

3:15 pm the decision was made to replace the port. (This is Christian's third port).

We were allowed to leave the hospital, drive back home (2 hours), packed our bag, took the dog to the dog sitter, went by the church to get a couple of things and fold bulletins for Sunday morning (because hubby is out of town) and then me, Christian and Lance hit the road back to Albuquerque (another 2 hours).

9:20 pm arrived at hospital and waited for room to get ready. While waiting, I mixed factor to infuse, and the IV blew.

Could the day get any better?

9:50 pm our room was ready, my husband walked in, we were all together and a specialty nurse came up to our floor to start a new IV (two sticks).

Now I am listening to the beep of monitors, looking out an all too familiar window, while smelling "hospital." I am comforted by the familiar faces of the nursing staff, and even the workers in the café downstairs that have become friendly to me in the wee hours of the morning.


I am thankful for the familiarity, the comfort in knowing my child is in great hands, but I have yet to truly "feel" the events of the day. I am little scared to let myself completely give in to what happened today.