It Has To Be A Better Way...

1st Day of Blood Transfusion

Transcranial Doppler (TCD) ultrasound screening can identify children with sickle cell anemia who are at elevated risk of stroke and may benefit from chronic transfusions.  When doctors notified us KJ's test were abnormal, they aggressively started him on a weekly blood transfusion regiment. At the time, we had know idea he would have to have chronic transfusions for the rest of his life.

KJ hates being poked! It broke my heart to think about how I would tell him in addition to all the regular pokes from ER and clinic visits, he will be getting poked a lot more often.  Dealing with the diagnosis the best I could, I informed KJ he would be receiving his 'superhero' powers.  I found the perfect superman shirt with a cape attached from Target.  He loved it!

The 1st few weeks of blood transfusions back to back prove to be extremely emotionally draining for me and my husband.  More importantly, it was painful and traumatic ordeal for KJ.  It got to the point, we needed three people to restrain him in order to start his IV.  Often times, my husband would leave work to come help me hold KJ down for his poke.  As I watch my son scream, cry and fight with a lump in my throat I thought to myself "it has to be a better way."

I am failing him...

Keith (daddy) & KJ are both emotional after getting poked 

KJ was diagnosed with Sickle Cell Disease (SCD) at birth. Needles to say Keith and I were devastated by the diagnosis. For the first five years of his life, KJ was on a daily liquid penicillin regime, a course of action that proved to be productive as he didn’t exhibit any physical signs of the disease. 

KJ’s sickle cell began to manifest a few months before his 5th birthday, doctor’s informed us that he was at risk of suffering strokes due to the lack of blood flow in his brain. Routine ultra sounds of the head, called transcranial doppler screening (TCD) was used to check the speed of the blood flow within the brain. To prevent him from suffering unimaginable pain, KJ began a series of blood transfusions. 

The reason for blood transfusions it lowers the amount of hemoglobin S red blood cells in the body.  Fewer sickled or crescent shaped hemoglobin S red blood cells in the bloodstream, less likely of cells becoming blocked or sticky. Although blood transfusions has proved to be beneficial for him, it would be required for the rest of his life. But there are also many risk factors with long term blood transfusions, such as iron overload. 

At only 5-years old, how was he going to endure getting poked in his tiny veins for life?  It was becoming harder and harder to watch him suffer, scream, kick, and fight to avoid getting poked. One day, while he sat on my lap and two nurses held him tight to start his IV, he swung his head back as hard as he could and 'head butted' me in the mouth! The pain spread across my face and tears came to my eyes. No, I didn't get angry, I asked him why would he hurt me like that? His response was "you let them do this to me!"  Those words along with his tears broke my heart.

I am failing him. I am his mother. We are his parents. We can't continue to let him suffer.  We have to protect him.  We have to ensure he's getting the best care available. And this where our journey to cure KJ began.