Seth had a bad reaction today during his second IVIG infusion for his immune deficiency. He’s okay now, but it was not good.
He did fine his first infusion, and he was fine today, and then they increased the IV rate. Shortly after that, he became nauseous and needed to pee, so I took him with his IV pole into the bathroom and left Riley in the infusion room. Once in the bathroom, Seth became really ill and began throwing up. I left him for one second and ran to the office, shouting from the door for someone to help, and the only one who answered was Riley. I don’t know where the rest of the staff was, maybe in with other patients.
“Riley, tell them Seth is sick.”
She did. Soon a nurse was there and she stopped the infusion.
I sat Seth on the toilet seat, and he kept throwing up into a waste basket, but he could barely hold his own body up, so I kneeled on the floor facing him, and he slumped onto my shoulder, moving me out of the way every so often so he could puke. He kept saying he wanted to lay down, but I refused to let him lie on the floor in the bathroom.
Finally, I let him kneel on the floor with his arms resting on the toilet seat. I didn’t like the idea, but it was a one seater bathroom, we were the first appt. of the day, and I figured it had probably been cleaned overnight. My knees couldn’t take kneeling like that to support him much longer.
So kneeling, his forearms on the toilet seat, I’m rubbing his back and there is the sound of an explosion. He had massive liquid diarrhea in his pants and didn’t even react, he was so completely out of it. I’m trying to take his pants off, and clean him up, and hold him up, and where the fuck is the nurse? And she comes in after what was probably five minutes but seemed like an hour and takes his temp. His blood pressure was 80 over 40. She started a different IV, just fluids.
Keep in mind, as all this is happening, Riley is having a problem with her brand new braces, and there are metal wires that have come loose and are poking straight into the backs of her cheeks, and she will not survive the weekend if we don’t get to the orthodontia office before they close in the next two hours. If all had gone well, we’d have had plenty of time.
With my cell I call Todd at work to ask him if there is a possibility he could come help me. As I explain what they are about to do, (give Seth an IV push of a med to help the nausea, and another one to help the inflammatory reaction, Todd the hospital pharmacist starts yelling at me through the phone YOU DO NOT GIVE THAT MED IV PUSH,...as the nurse is pushing it in, and Seth starts crying because it is burning..BECAUSE IT ISN’T SUPPOSED TO BE GIVEN IV PUSH) and I’m on the floor in the bathroom holding him up with Todd mad in my other ear and my baby is so sick, and Riley is God knows where, on her own.
We got Seth back into the infusion room, and he was pretty wiped out. He looked so pale, and weak, sitting back in a recliner, wrapped in nothing but a blanket from the waist down. I had not thought to bring extra clothes in case my nine year old pooped himself. I held him and rubbed his forehead and Todd came bursting in the room and Seth opened his eyes in a flutter and said in a tiny weak voice, “Hi Dad. How was work?”
I had to bury my face in my shoulder to hide my tears. Our boy is so freaking sweet, he feels like death and he inquires about his dad’s day the second he sees his him. Todd got all choked up too.
Finally, we got him settled, feeling better, and we continued the IVIG at a very slow rate.
Todd took Riley to the orthodontist, and came back quickly.
After we finished the PA came in to talk to us. In that way many doctors have of not wanting to take accountability he suggested maybe Seth has the flu, and asked if he’d had his flu shot? The child was fine, they increased the IV rate, he had a reaction. It isn’t the fucking flu.
“No. He hasn’t had the flu shot and he won’t be getting a flu shot.”
“Do you want to tell me why?”
What I said was, “No. We’re done talking about this.”
What I meant, and what I’m pretty sure came across was, “If you keep going with this, you are going to be a freaking carcass before lunch.” I’d had enough. And I am no longer in the business of trying to convince anyone about anything. If you don’t know flu shots are filled with crap and ridiculously ineffective, and about profit rather than public health I don’t know what to say. It’s not worth my energy to debate you.
“Just considering all the possibilities,” he mumbled upon retreat, defeated. I’m sure he’s pitying my “ignorance” as much as I pity his.
We finished the infusion. Seth is home. And he’s fine. He’s playing with his iPod. His appetite is good. No flu.
I am so jacked up right now I probably didn’t need coffee or the two donuts I just emotionally consumed.
Two down, four to go(infusions, not donuts, I’m done with donuts).
I sure hope this IVIG helps our boy.
Oh, poor kiddo! I’m so sorry!! Can you request a different team next time? And it would be worth their time to hear what happened last time and answer you what they’ll do differently next time so that this situation doesn’t happen again. I just posted on fb that PANDAS is kicking Noah’s behind the last few days :(.
and love the way you handled the flu shot question. I completely agree and you said it beautifully.
I’m sure it doesn’t actually make you feel better, but I sit at my desk crying reading this story. How absolutely horrifyingly awful, on so many levels. Poor little buddy. My heart goes out to you all.
I hate that feeling that you have to constantly be on guard and watchful because you can’t trust that the “professionals” will be. Was it phenergan that they pushed? If so, they ought to be sued. Love that precious boy of yours!
Exactly what Kerry said. My heart broke a little more with each word. I’m so glad he is ok now…how horrifying for all of you. Love to you all.
P.S. No flu shots here either. Ever. ;0) I get it.
Hi M’on, I am emailing you. God what a freaking day…
Indeed it was Meg. Spoken like a true lawyer!
We’re going to speak to the people at the top of the food chain there, because eventually they are going to have a bad outcome (when we questioned them they said they give it that way all the time). When a patient is truly injured, they really will be sued.
love.
love.
love.
Please stop what you’re doing and go gather your children and HT for me. Stand them all together in a circle and wrap your arms around each other in the gentlest, most reverent embrace you can. You are all so brave and steadfast with each other. I am so pleased Seth feels better now. I am so glad HT was able to show up. I am so proud of Riley for finding help as quickly as she could and I am moved beyond words at your ability to function as this all happened.
Stand there and breathe in as you hug each other and know that you are supported by each other and so many more of us who are out here rooting for you all.
Love and light.
Oh My Goodness Michelle! What an awful experience. It truly was even painful to just read about. You are the BEST Mommy! I am so glad that you are all home safe and sound now.
Unbelievable that you have the ability to make me cry through reading the story and then end up laughing at the end about the coffee and donuts! You are amazing!
What a DAY, holy cow! Hope he is feeling better and that you get some good rest tonight. whew!
So sorry to hear about this and so relieved Seth is OK. But what jumps out at me is the amazing way your kids both handled this. I wanted to write something after Riley’s Braces post but this just makes me want to write it all the more.
All the HARD WORK (and I mean effing hard work…) you and HT have done to support your kids, meet their needs and create in them empathy, love, wisdom and security has been amazing. And look what you have – kids who were calm, helpful and sensitive to needs even in their own discomfort. YOU ROCK! (And you totally deserved those donuts!)
Praying the days ahead are filled with peace and health. Take care!
Oh, my gosh. The first thing I thought is that you can’t make that shit up. Just wild. And awful. And overwhelming. I haven’t been to your blog regularly in a while (and regret that!), so I’m not sure why your son is getting IVIG (my daughter has received infusions many times for a certain type of seizure disorder), but I’m so sorry to hear of that inflammatory reaction. I can’t imagine how wired you are and hope that you’ll breathe and take comfort in the beautiful comments left here. I’m adding my own love here, too!
Scary.
I love your whole family. Ditto Kario.
I also love donuts and coffee.
Well thank goodness HT knows what he’s doing because they certainly don’t! Thanks for heading that up as “He’s fine now” because reading that horrific experience I just had to keep reminding myself of that.
Hope you find the courage to finish the treatment and it helps Seth.
Love & happy thoughts to all
Oh man. What an awful experience, Michelle. I feel so bad and mad for all of you. I’m so glad he’s doing okay now.
I’m so sorry about your awful experience! Sounds like you handled it really well though. And thank you — I’m SO glad someone else things that flu shots are a load of crap! I never get them myself and do not want Sophie to get one either. Hang in there!
Oh dollface. Yikes! (((all of you)))
ox 🙂
I soooo get it. My Mom has to have infusions every 8 weeks for Crohns disease. She too had a terrible reaction when they pushed the medicine too fast through the IV. I told them she was getting really sick, and they wouldn’t listen till her breathing was affected. Now, the staff gets it and respects us when we say start slow and she will tell you when you can speed it up gradually. Yes we tie up the bed a little longer, but at least she keeps breathing and then can walk out after the treatment. I never let her go by herself in case there is someone new and thinks they are going to do the treatment their way instead of her way. One size medical care does not fit all. But of course, something bad had to happen before they would listen. Health care advocacy is exhausting.
Dear Michelle,
I held my breath through your entire posting. It’s amazing how resourceful and resilient Seth and Riley are. They’ve learned from their parents obviously. The strength you all share comes out loud and clear here. But what also comes out is what “Maggie’ said in her comment: “Health care advocacy is exhausting.” And if you and Riley hadn’t been there for Seth, what might have happened. The whole happening is appalling.
I hope all is better now and that the doughnuts have been eaten and enjoyed and that the stress level is back to a reasonable level.
Peace.
Poor thing! May he be healed, fully!
oh sweet seth. so so sorry.
This is a frightening experience for you and your family. Also frightening is a medical “professional” saying he has the flu and asking if he had his flu shot. WHAT? No flu shot covers vomiting and diarrhea