Wednesday, January 01, 2014

Third Verse, Same as the First...

OK. So after his crazy anaphylaxis, Adi stayed an extra day in the hospital and came home last Wednesday night. By Thursday evening, he had a fever, and that meant a trip to the ER. And then they told us that there was no room in oncology, so we'd have to be on a regular pediatric ward.

By the time we got to bed, it was around 1am. The on-call doc on the ward came and asked a lot of questions, including: "What medications is he currently taking and at what doses?" Um, really? He's a patient IN THIS HOSPITAL. Can't you access his records? What if I get something wrong? They also couldn't figure out where to get some of his meds.

"Um, maybe down the hall, in oncology?" I suggested. Clearly, the distance was too far for them, so in the end, Guy went and got a couple of things by himself, and for our entire stay on the peds ward, we administered Adi's Zyprexa ourselves.

"Why does he take Resprim?"

"Because he has leukemia."

"Why do you keep the door to your room closed?"

"Because he has leukemia."

"Why does he have a port?"

"Because he has leukemia."

Every day, we went to the onco ward and asked if they had found any room for us. Every day, they really did try, but there were a couple of kids who had to be in isolation, which reduced the number of available rooms.

Over on the peds ward, the department head's rule was that once a port was deemed infected, it could not be used, and it would be washed with an alcohol lock daily for 72 hours. Our oncologist disagreed ("It's a minor infection, and he's on antibiotics. There's no reason to stop using the port."), but the other doctor had seniority, so my kid suffered the indignity of being stuck -- and I WISH I were making this up -- about 27 times until they got a working peripheral line in.

The onco ward is fairly quiet. I mean, there are a couple of people who have loud voices, but you can shut the door and shut out the noise. On the peds ward, there is CONSTANT noise. They use a loudspeaker to call patients to the treatment room, to ask if anyone has a charger for an iPhone 5, to remind the parents to return the breakfast, lunch, and dinner trays -- it is noisy. And EVERY day is grand rounds, with TONS of students and doctors who think their stories are more important than my kid's rest, and MORONIC IDIOTS who use tongue depressors to check my kid's throat when his mouth is FULL OF BLEEDING SORES. (I refused to help that guy. Pretty sure Adi gave him a black eye.) (Just kidding.) (Sort of.)

On Sunday, Adi was supposed to get platelets, but they waited until the platelets were delivered to try to put in a peripheral line, and then things didn't go well, and then they finally got a line in, but it wasn't a good line, and so the platelets were going in veeeeeeerrrrrrrry slowly, so they tried to use this doohickey that puts pressure on a syringe, and in the end -- and it causes me actual physical pain to write this -- the platelets expired and they THREW THEM IN THE TRASH.

On Monday morning, Adi's platelets were still very low. "He needs platelets," I told them. No one even listened. On Monday evening, I told them to take a new CBC. They didn't. On Tuesday morning, when Adi woke up, his nose gushed blood -- it looked as if someone had been murdered in his bed. He coughed up huge chunks of mucousy blood (they look horrible, but the oncologist assured me that it wasn't anything to worry about) and bled and bled and bled. They got him hooked up to platelets at my insistence, and when his CBC came back, they discovered that his platelets had dropped to 5000. Hence the gushing blood.

That afternoon, when the oncologist came by and I related our adventures, she agreed that she would also push for Adi's swift transfer back to onco. And lo, the transfer order came, so the peds ward dosed Adi with his morphine and sent us on our way, which INFURIATED the onco ward nurses. "WHO TRANSFERS A KID WHILE HE'S GETTING MORPHINE?" they shrieked. "ALSO, WHAT ANIMAL PUT THIS SET IN, IT'S A MESS." Within the hour, they had us sorted, though, and all was well.

Today, Adi still has a fever, but his abdominal CT, echo-cardiogram, and eye exam were all normal. "So, why do you think he has a fever?" I asked the oncologist on the ward. He shrugged. "Eh, fever." he said. "So I shouldn't worry?" I asked. "You're his mother," he said. "It's your job to worry."

I EXCEL at my task.

Meanwhile, Adi has been playing quietly with his garbage cans for the past 4 or so hours. I watched two episodes of Homeland (GREAT FOR RELAXATION). And he's sucking down the first of two units of blood right now. Not a bad day.


Crystal T. said...

I'm cringing for you. I'm so sorry you guys experienced that. It sounds like a nightmare! It kind of reminds me of our recent ER experience where they just did everything WRONG when it came to treating a cancer patient. At least our Case Manager had told me long ago and repeatedly that I HAVE TO advocate for my kid and tell the medical professionals when they are doing something wrong. It's so difficult and intimidating to do that - not to mention frustrating because they are doctors and nurses and went to medical school and I did not - but you may be the one saving your kid's life from clueless professionals.

I really hope that you guys get out of there soon and Adi's health stabilizes!! I'll keep you guys in my thoughts!

Anonymous said...

You and Guy are doing all the right things, Abbi. The fact that you are present so much is helping Adi get the best care possible. I am confident that it would have taken longer to get back to the onco ward if you hadn't kept pushing for it. You probably saved Adi another 27 needle sticks and you certainly got him those extra 4 hours of time playing with the garbage cans. Love, Steve.

Anonymous said...

Dear Abbi,
My heart goes out to Adi, you and Guy. I agree with Steve that your presence is not only a comfort to Adi, but goes a long way to get better care from the hospital personnel. Remember to smile as you hit the morons with a cat-o-nine tails.;-)) May the rest of Adi's stay bring only good results, with none of these vicious side effects. I am amazed at his smiles and ability to put the bad days behind him.
Jane S

Mara said...

I loved the "I excel at my task" line. Because I can totally hear you saying it, too.

You do excel, by the way, at your task. So much more than you know. You are a fantastic mom and fierce protector of your children.

I love you!