as the world turns…
It has been almost six weeks since Jack’s surgical procedures & you’ve received an update…
To be honest, I thought at this point I would have a lot to be excited about, but similar to the soap opera and the title of this post, the world continues to be the same.
Within only a few days of being home, Jack got an infection in his tube entry site.
He complained of pain casually, but within 24 hours the redness had spread and he was crying in his sleep.
We had an entire day at the emergency room & came home with another round of antibiotics.
…unfortunately, Jack also continues to suffer from episodes.
While they’ve been less severe, they are still a part of our everyday life.
Our goal since his surgeries has been to increase his oxygen levels.
Several times a day & the entire night we monitor Jack’s oxygen.
The smallest drop in levels has us prepared to go back to Hopkins.
In addition to the constant monitoring, we administer all his meds and fluids through his G-tube.
We also have him sit twice a day for a VEST treatment.
It rumbles and sometimes he loves it, sometimes he hates it. But we force it.
All of that, inhalers & saline treatments, we hope & pray it keeps him healthy.
Two weeks ago, when it seemed we were getting into a good groove - Jack had a rough night of sleep.
He refused his CPap mask - and refused a nasal cannula - all while his oxygen levels were diving.
Instead of his saturations hovering around 87/88 asleep, they dropped into the 70s.
Jason was out of town that night so I didn’t have many options other than hope to get his mask on...
No such luck.
I had to physically hold the oxygen mask near his nose all night to maintain healthy levels.
I did not sleep a wink.
The next morning he seemed okay - his levels while awake & active were staying in the 90s.
But around dinner time, while not thinking about his oxygen, his tube completely clogged and we could not push any fluids or meds. Shit.
Time to go to Hopkins.
At the ED, the nurses had no issue declogging his tube, but the tools to do this at home they won’t give us?
Of course not.
But, as per usual & as I did expect, his oxygen levels were concerning.
They ran a virus panel & did a chest scan, all clear.
So why in the world were his oxygen levels low?
No answers - so we were being admitted.
The process of being admitted from ER to the 11th (oncology) floor is not as seamless as you’d think by now.
After several hours spent settling Jack to sleep & him accepting his mask this time…
and myself just drifting off after desperately trying to find a comfortable position on the crappy hospital chair…
I was awoken by bright lights & hard tap on my shoulder.
“Time to go upstairs” at 3am.
Ugh, okay.
So I turned up the volume on the sound machine, covered Jack’s eyes from the bright hospital lights and hoped that he would transition easily. Once in the room, his mask slipped off and his levels dropped quickly.
A new resident rushed in - we have never met before, and she was adamant that his mask must go on.
She started talking to him while he was asleep, he ignored her and continued to fall deeper back to sleep.
She continued…
He started to get very angry and I saw an episode brewing…
So, I fought with her. Sorry, but at that point, I had not slept in two days.
I tried to tell her the process, the cycles, the fact that she was not going to get anywhere if she continued. She refused to listen, and I had to continue to be forceful, and rude… to get my point across.
Eventually she caved.
The amazing nurses stepped in, as they always do, and even had a bed made for me to sleep.
They turned off the beeps and noises in the room & watched him from their nurses station so I could sleep.
I finally dozed off & didn’t awake until 7am to Jack staring at me as if he didn’t just cause a whole 48 hour ordeal. We ordered Starbucks & played iPad games and waited for rounds.
The first doctor in was the lovely Dr. Vanscoy. She was randomly scheduled that day and I swear when she walked in I felt my body relax. How was it possible in all the stays this summer, we never met her?
She knows Jack well, and she listened to his lungs and said,
“I was nervous when I saw him on my chart today. But I’m happy to tell you he sounds good. And is in much better shape than he was the last time I saw you both.”
Okay, good, great… “but WHY are his levels low?”
The long and short of it, we believe, is that he is still recovering from a years worth maybe longer of pulmonary damage due to aspiration.
Further complicating the issue is that it is also possible that as his brain tumor shrinks & moves, it could be affecting the messages telling his lungs to breath. Terrifying… and nothing we can do about that.
Dr. Vanscoy assured me that the plan & tools we have at home are better than anything else & she was fine with me taking him and continuing business as usual.
We were immediately discharged.
——
The very significant and unexplained issue right now is Jack’s rapid weight gain.
Jack weighed 51lbs when he was admitted in January of this year.
Jack weighs 95lbs now. 44lbs in less than a year… no answers. No solutions.
His oncology team does not agree it is caused by the medications he is on.
His pulmonary and pediatrician team do not believe this weight gain is from steroids as he’s never been on them long term, 6 acute situations since December 2022.
His genetics panel all cleared with no abnormalities.
His endocrine panel was all normal - the only thing elevated was IGF-1, but they say those elevate when someone is growing, which he is in height AND weight.
Nutritionist believe that his diet is normal of a kid his age, and that even if he was taking in more calories that would be more like 10-20 pounds but not almost half of his weight.
____
I’ve continued to read a ton of literature, case-studies, talked to other parents via online forums and all I’ve learned is that us parents are in a very scary, unknown, and unfortunately not studied enough situation.
We keep being told we are “doing a great job” and that he is “lucky to have us”
Makes me believe that we are the ones keeping him alive —- and not a lot of help coming our way.
That is just not good enough for me, for us… and for Jack.
So we continue the push. The asking of questions…
_____
Please continue to pray for Jack, for us… and for the girls.
Hug your kiddos harder tonight - & appreciate all that you have.
And plan that trip that you’ve been talking about - we sure wish we did before all of this.
