dispirited
It was a challenging week, and I am sorry that it took me a bit to get this update out.
But after a really great holiday season -
we were extremely positive and optimistic going into this week’s scan.
His last scan was on September 11th - over three months ago…and since the procedures in October, it felt like we were seeing happy and healthy Jack finally after a really long time.
But, SCAN DAY WAS HORRIBLE.
We had to be there by 9:45am for a sedated 11am MRI - us & a starving Jack sat there for hours until they finally took us back. Fine, we survived that.
_
The nurses started by giving Jack a relaxant (Midazolam)
…but then just left us…& did not come back.
We saw the meds starting to kick in but he was sitting in a regular chair - unable to hold his body up…
I rushed to the get help and a stretcher so that we could get him into a safe position.
I wasn’t happy - but tried to remain calm.
Jack was funny though - he started giggling at me as he said,
“you have two faces and one just fell off into your butt” - a glimpse of a what drunk college Jack could look like.
_
We finally get back to the MRI room - and they put him fully to sleep with a gas mask.
Then they administer Propofol through an IV to keep him asleep during the scan.
Everything seemed a bit disorganized - Jack didn’t have oxygen standing by, or even a pulsox on to monitor his levels. We spent an hour it felt telling them his history & concerns with anesthesia, but it didn’t seem like they were fully listening to me.
They escorted us to the family lounge to wait.
_
The process at this point is usually about an hour - but over two hours had gone by with no updates.
I started to get really nervous.
The folks at the front desk inform me he is in route to the PACU, so I feel slightly better but something still seemed off.
_
As they lead us back to the PACU, the doors swing open and I can hear Jack’s scream from the hallway.
I start jogging down past all the curtain areas when I see five medical professionals trying to “manage” him.
I’m two steps away when the anesthesiologist physically stops me mid run.
“Hi Mom, hold on, before you go in there I need to update you on what happened the last two hours.”
Wait, what? I am frozen… confused…
She begins to say things like;
“oxygen levels plummeted”
“I thought about cancelling the entire MRI”…
She tells me a list of medications they used…
And her voice fades, I push her aside and just go to Jack.
I wrap my arms around him and tell everyone to give him space…
_
He calms down.
I calm down.
The entire team calms down.
Jack’s oxygen levels rise and we all literally catch our breath.
He peacefully dozes off to sleep again & his oxygen stabilizes.
_
As the situation quiets, my body does the opposite.
I can hear my heart pounding in my ears as I start to boil with anger.
What the hell just happened? Jason’s face is the same.
_
I demand for them to begin again - step by step what happened…
During this they started telling us that we need to be admitted.
They go back and forth between which team is in charge…
The PACU nurses ask the anesthesia team, the on-call pulmonary team, our oncology team - and no one has any decision making power?
No one would let us go but no one was in charge of keeping us either.
Oxygen is always an issue, we know this.
I remind this medical team that we deal daily with oxygen saturations.
I continue to tell the same story over and over again.
“He has a brainstem tumor and severe apnea. You just gave him multiple sedating drugs.”
Give him time to wake up…
_
Hours go by and we continue the same conversations with EVERY doctor.
Then we both remembered - you can’t keep us here.
So - yes, WE REFUSED to be admitted and started packing up our stuff.
We’ve never done that before - and all of the doctors recommended we stay etc… but we said no.
_
We get home in time to say goodnight to the girls…I check my emails, results are in.
_
Listen, I had really hoped, maybe even fully expected, the results to say “no sign of disease.”
Meaning, the tumor was completely gone.
BUT - tumor is the same exact size it was in September. No change at all.
We were shocked & really disappointed.
We just finished another 3 full months of medications. And Jack has been seemingly healthier & happier.
Why would it not have shrunk??!!
Our oncology team said that stability in brain tumors is a good thing as well -
and they are “okay with this scan.”
But after that traumatic experience for just a routine MRI - we are left feeling dispirited.
_
Jack has been home all week & we’ve been doing what we always do.
He is sleeping fine & his levels are good…
He likely is recovering from a possible cold that lead to some mucus in his lungs, but nothing we haven’t seen before - nor something we can’t handle at home with all of our tools.
So we know we made the right decision - but moving forward, I will be at the MRI the entire time.
And no one can tell me otherwise - it is time for us to take control of this situation and stop being led by people who don’t take Jack’s health history serious at every step.
