The fight begins

Today began the fight for Jackson.

First it was ambulatory care at the hospital. They called to confirm
the sedated MRI on Thursday, and to give us the instructions. He
cannot have breastmilk for six hours before, but if he were six months
old he could. It makes no sense to mandate some arbitrary age. I
asked why and she said, "It's been that way for the six years I've
been here. I'm not sure." I said that the studies show 4 hours is
adequate for digestion and she just reiterated that she wasn't sure
why, but that the orders come from anesthesia. So, no breastmilk for
6 hours before, meaning he can't nurse when he wakes up and is going
to be hungry (and cry) from the time he wakes up until his
MRI. He is allowed juice or water three hours before, and we've been
working every day on getting him to take a sippy cup or a bottle, and
he won't. At all.

I asked about the sedation. She said that they will "put him under
and then page us when they're done." I pressed. I wanted to know if
we could be there, how they will do it, etc. She said it's up to the
anesthesiologist, but that they typically either put in the IV and
then put him under or gas him and then put in the IV - but, that
because of his back curve they want to monitor his airway and they may
not want to gas him first in case of an airway problem. I said, "I
don't see how having in an IV is going to impact his airway - if he
goes into respiratory failure, won't they intubate?" She agreed, but
said that it's up to the anesthesiologist and they just like to have
that IV in before when there's an airway issue. (Jack has never had
oxygen, never had a breathing problem.)

I asked about the IV. The practitioner he saw said that the numb the
IV area. I asked, to confirm, and was told that they don't like to do
that and don't like practitioners to say that. She said, "If he has
small veins and we numb, there's a chance that we'll have to do a
second stick." I said, "Well, his veins will be small from dehydration
anyway, since he can't have anything to eat or drink for hours
beforehand, right?" She just agreed. She said they typically put in
the IV in the hand of the foot, depending on where his veins are best.
I can't see any in either place.

She then said that they'll either have us in the room when they gas
him, or they may opt to "have you say your goodbyes and take him back
before they put him under." He cries when the waitress gets too close
at a restaurant, and I'm supposed to hand him over and let them put
him under in another room? With the knowledge that he could go into
respiratory failure? Shall I just sit with my hands folded and wait
patiently, then?

I'm so frustrated and upset. This is NOT what we were told would
happen. This is NOT what we want to happen. Just because he's an
infant THEY get to choose? I know this needs to be the safest thing
for him, but I don't understand why they can't help him to not feel
pain, or at least not as much pain. I can't even nurse him for
comfort, which is documented to relieve pain. I am SICK over this -
positively sick.

I heard, "Come by and drop off your starving baby so that we can take
him in the back and stick him with needles without you here and
without comfort measures - and if something goes wrong, we'll just
page you and let you know after the fact."

We also called Shriner's to see if they'd cover his helmeting and they
said no, but referred us to another organization who may help. But,
in order to help, we have to get a denial from insurance. In order to
get a denial, we have to have him casted, and in order to have him
casted, we have to pay for it up front.

Shriner's did say that they get at least two calls a week for this,
and that it's so frustrating because insurance claims they're
"cosmetic and unnecessary, which, just flat out isn't true!"