pneumonia, again…
We’d been home from vacation for a few weeks & we were able to mitigate episodes. A few here and there but we started to recognize the signs and were able to get to him before they happened.
But after a long weekend, swimming and late nights, Jack started to sound congested. We started the steam showers, the nebulizers, upped the albuterol inhaler, but nothing seemed to work.
We started monitoring his oxygen again at night, and his levels were getting down into the low 80s.
We know at this point that he does have apnea, it just hadn’t been formally diagnosed but these levels were not good and he didn’t sound good.
Jason took him to the pediatrician while I was away for a work meeting & they told him to head to Hopkins ER. They didn’t like the way he sounded and his levels were too low…
This time around we know what to expect - we pack an overnight bag, blankets, pillows, games, coloring, iPads, cars, etc…
They admitted us & we began the oxygen battle & repeating the same story through rotations. Our nurses have always been our advocates & know Jack the best - but the residents continue to change & often the fellows too.
“Jack has apnea. Likely central and obstructive”
“No, we don’t have oxygen at home because his sleep study is still pending.”
“Jack has a paralyzed vocal chord & likely aspirated.”
“Jack might have asthma but we treat him as if he does.”
“Jack gets upset and stops breathing.”
“Jack hates doctors so please try to keep that in mind when you come at him.”
“Jack will drop into the 70s and 80s when he’s asleep - please do not add another day to our stay.”
“We are doing what we do here at home, please let us go.”
This time around however, I had a very intense conversation with his entire oncology team.
In addition to all the breathing episodes, Jack has gained almost 30lbs since the start of this.
No one has any explanation - for the weight gain or for the episodes.
But I reminded them, the weight gain does not HELP the breathing…
I pleaded with his doctors to take me seriously, I told them the amount of scientific papers I’ve read connecting all of these dots and they need to do the same.
I reminded them that we are his full-time care takers and that he is our 1 patient - and to listen to us.
I cried, they stared. I got mad, they stared. They left… no answers.
5 minutes later, a knock on the door.
“Mrs. Taylor, may I sit with you.”
This doctor was new and we had not met before. He says to me, “I hear you. I believe you. And no one is telling you this but we are very puzzled by Jack. He is not like any other patient we’ve seen and we were thinking that this was all connected to the tumor, but maybe it is not. We just don’t know.”
I thanked him for his honesty. I thanked him for listening… and then I said,
“if you actually mean what you say, you will make sure I have oxygen at my house when I return home. I am not going to stay in this hospital every time Jack is sick for the oxygen tube coming from the wall. Give us the tools we need to be at home with him…”
We were discharged within the hour and Hopkins in-home care was at our house when we arrived.
The doctor got us oxygen…
And since then, Jack wears a cannula while he sleeps and has been happier and sleeping better.
Jack “wuvs his Wivian”
