Today it is hitting me that I am part of another community I
never asked to be in. My beautiful son-shine looks absolutely perfect but he is
not. Not medically, anyway. He has Bruton's which is a Primary Immunodeficiency Disease (PIDD). I
still have to look that up to make sure I’m writing it correctly. As of right
now, half of his immune system is missing. His B-cells are pretty much non-existent
which means his body does not produce antigens that fight off viruses and
bacteria. What would be a slight cold to you and me could mean pneumonia to
him.
It all started with feeding issues. He would be hungry but
then would cry, arch, turn away from the bottle when I would try to feed him. There
was a lot of spitting up & vomiting and a lot of feedings because he would
take in so little each time that he would be hungry very soon. At first glance,
the GI thought my 3 month old was suffering from reflux but when a change to his
formula showed no improvement and there was a serious weight loss GI ordered us
to the ER to make sure there were no obstructions or other internal issues. The
ER doc noticed his breathing was kind of fast and x-rays were kind of cloudy
but his lungs sounded so clear that pneumonia was not a thought in anybody’s
head. Well, 2 ER visits, a 5-day stay in NICU, 2 more ER visits, another
hospitalization that lasted a little over 3 weeks and yet another ER visit
later we finally got the confirmed diagnosis of Bruton’s; or Agammaglobulinemia;
or X-linked Ag; or BTK. They are all the same and half of them are not even
recognized by my spell check. So here I am, a member of the primary immune
deficiency community. Oh, Holland, why do you hunt me down while Italy evades me?
So now I have to be my son’s nurse along with my daughter's. Every week he
needs two infusions of a medicine that contains the antigens his body does not
naturally produce. Yes, I have to stick him with a needle. Every week.
This will be a life-long issue for him. There is no cure as
of yet.
2 kids. 2 chronic conditions.
