Today was the last day of abdomen radiation and it went well, with no hiccups. Now we wait and hope for the best. We don't have a plan for the chest yet; I think it really depends on how fast his body rebounds from this radiation.
His weight is up even more today. Yesterday
he finished the day fluid positive(over 700mL) and even with his bumex
doubled he still isn't peeing as much as we had hoped. He has so much
extra fluid in his body and the edema is just awful. His skin feels
like jello; it is the first time my skinny boy has ever has jowls and
rolls...rolls of puffy, fluid-filled skin. Everywhere. To the point
that he may even be bruising from the edema. Cankles, jowls, shoulders,
arms, legs...you get the point. Poor J.
One of our intensivists
who was not working today stopped by to chat and get some candy this
morning and Hubs mentioned a new belly tube might help since the old
belly tube is old and not working. He popped right back in the room
with an ultrasound machine and put a new one in right then and there.
And promptly pulled off 200mL plus whatever initially came out when they
put it in. That candy basket is worth the money! :) Hopefully this
new belly tube will make Jameson a bit more comfortable.
is hopefully going to be lightened tomorrow. We really want to get
Jameson as awake as possible and get him using his body again. He has
been heavily sedated and paralyzed for most of the last 2+ months and
has very little muscle-power left. Even his bowels have fallen asleep
from the sedation drugs and we need to get this boy up and moving a bit
so we can start back on the road to recovery. The physical therapist
and I were talking this morning and she said it typically takes kids 2-3
times as long as they've been sedated to get their muscle strength back
to where it was. That means it will take about 8-12 months to get J
walking and running and climbing again. We start slow with baby things,
like tummy time and learning how to roll over again. I can't wait to
get to the point where that is what we can focus on.
One of our
specialists came in to talk with us this morning and wanted to get a
feel for how we are feeling about everything. Basically it came down to
wanting to know if we were still hopeful or giving up on the idea that
this could still turn around. While that may sound really callous, it
is a valid question. A few weeks ago we had a care conference with all
of our specialists and there was very little hope left for our sweet
Jameson. It was to the point that they flat out said they would
understand if we decided to let him go that day. Yes, it has been that
bad. And every day, we are aware that he is here by the grace of God(as
we all are...) and it could take a turn for the worse at any moment.
Her questions kind of caught me off guard because -while nothing with
his disease has actually improved- J is doing okay and we are still in
experimental treatment. Of course we still have hope! I guess in a
way, getting grounded once in a while isn't a bad thing but it does
carry a nasty sting. I do still hope and believe that we can beat this
-even if only for a few more years- but I want to be realistic too. J
has been diagnosed with a terminal disease and he has been fighting for
his life for over two months. How do you come to terms with that?
Right now, hope and faith are just about all that keep us going. We
hope radiation works. We hope his body heals. We hope his lungs
strengthen. We hope a freak infection doesn't sneak in and ravage his
body. We hope he keeps being the amazing fighter he has been. And we
hope this buys us enough time for a cure. It is a tall order and he has
already defied all the odds by making it this far. Jameson is a
living, breathing miracle and I have faith that God can continue this
miracle. And I hope that is the plan.