They say it is normal. They know. I believe them but it will never be normal to me. The shaking, the pain, the fever, the heavy breathing...side effects of the ATG. The not knowing - will it stay within "normal"? Is he ok? We are afraid! We watch, we wait and we can't do anything to make it better. The doctors hurry in. They change the rate of the infusion and he settles a bit.

I hold onto him as tightly as I can and kiss his head until he falls asleep.  Moments later another nurse comes in to draw his blood. His lovenox levels are one of the blood tests that can't be taken from the broviac. Here we go again.  

Where is my Luke? I haven't heard his voice in days. He will barely make eye contact. He offers an occasional head nod. He will not even go for a walk and it is still so early in the journey. Sad, angry, sick...I don't blame him. I just want to fix it. I want to see that contagious smile that he wears so well. We were given a couple of seconds when he got to play the ukulele.

10am...this brave boy has already taken his orals, gotten his lovenox shot, had his dressing changed and did his mouth care without a hint of hesitation. Here comes the ATG...let's see what today brings!? I love you my little hero! 



Submitted by paula sperber on March 13, 2017 - 6:19pm

You have my heart, my prayers. my everything.....hang in there my are an amazing mom. I cannot imagine how difficult it must be to watch your child going through this. But the will be a giant light at the end of the tunnel!!!!!