Surgery number three is on the books for August 19th.
Why so soon?
Before Ali was born we knew there was a likelihood that this
heterotaxy would affect more than just her heart. It had been discussed that we
would have issues with her other organs as well, specifically her intestines
and spleen. As a newborn, a G.I. study
was done and showed that the spleen was absent, but her intestines seemed
normal. We were so relieved that she wouldn’t need additional procedures.
After Ali’s heart surgery we had major issues with reflux
(vomit, spew, barf, puke, blaaaaaaaaaghhghghgh). This called for an upper G.I. study at 5
months of age, which did reveal a slight malrotation of her intestines. However, the malroation has no correlation
with the spew. Her malrotation is of no
trouble to her at all, for now. There is
always the possibility that stuff (stuff=guts) could get fused together or
twisted, in which case an emergency surgery would need to be performed. Fixing her malrotation as a precaution seems
more sensible given that we have the good fortune of meeting with the surgeon
beforehand.
Still, why so soon?
Ali has been fed from an NG tube for about 8 months
now. She takes zero nutrition
orally. She is open to bottle feeding
but her swallow study reveals that she aspirates if she swallows any liquid
that is not the consistency of nectar.
We thicken with rice/oatmeal (the only thing approved for her at this
age), but the amount of work that it takes to drink that stuff disinterests
her. People food completely offends her
at this point (see below)….
The NG tube has served its purpose for the time being, but
its time to switch to a G-tube. The G-tube will be surgically inserted into her
abdomen and will be a better solution for long term help with nutrition. Since we are ready to make this transition in
Alessandra’s journey it only made sense to have her Ladd’s procedure (to fix
the malrotation) done at the same time…..and while they’re at it, throw in an
appendectomy as well.
Why so soon?
If we have to do this, I want it done before fall, a.k.a:
germ season. We are expected to stay 3
days in the ICU for recovery, given her need for cardiac assessment after the
procedure. The operation itself should
only be about 2 hours. The risks are
relatively minor. Of course there is a
risk for infection, and that risk is increased since she is lacking a spleen,
but is no different from the risks we faced with any of her other
procedures. We will have to get used to
her new “button” for feeding. The
benefits are that we won’t have to worry about future emergencies and she will
have a feeding “button” that will be concealed to all but those with x-ray
vision. This means she can go out in
public without stares, points and whispers.
I have to say… Ali has taught me so much. I used to think that having a child that
people stare at would be the worst thing in the world. It’s really not. Most
people are amazing! Some look, some smile, some comment indirectly hoping not
to offend but are still curious, some will have experience with similar
equipment and will blatantly ask “what’s up with her?” some will have no
experience but will still ask “what’s up with her?” Truth is, I don’t mind any of it. It has never been difficult for me to talk
about it. I have no issues explaining
what the NG is for or what the 02 was for.
Still, for the sake of mobility and comfort it will be much better for
Ali to have the G-tube. This way her
chubby little cheeks can be free of tape and she can blend in with the masses
;)
I know this surgery will be standard and successful. She will be fine. Still, I’m a mommy and this is my baby going
in for an operation and I’m scared. Our
family would greatly appreciate any prayers on 8/19 that no complications arise
and that she will recover strongly. She
just started crawling and I want her back on her hands and knees as quickly as
possible!!
<3
~Melissa
