I’m a little loopy after IVIG, but Seth…he’s fine.

Seth had his third IVIG infusion today and it went well. Todd made sure to get the morning off so he was there for moral support. We went at a slower rate, and even had to slow that down when I noted Seth getting antsy (which was the first sign he was having a problem last time). As soon as they lowered the rate, he was fine. He’s a little trooper and so is his sister who sat there in the tiny room for the four hours it took. (She has her iPod and snacks so it isn’t exactly torture, but it’s a long time to sit).

I am exhausted and didn’t realize how much I was “holding” as in energy, as in worry, as in the weight of the world, until after it was over and I knew he was safe. Presently, I feel like I could nap for a week. Thank you for keeping him in your thoughts and prayers.

My 40 Days program. Let’s see.  They want you to keep a food diary and what I’ve discovered is I mostly eat scraps. I make the kids a meal and eat what they don’t. I rarely have a nice, present, sit down, calm meal. I am so burned out from cooking. For so many years I had to make every little morsel from scratch. And as the mom, I sit down at the table and someone needs this, and someone needs that, and someone needs to be told to chew with their mouth shut, again, and someone spills something and it is never really relaxing for me. I hate being interrupted a bunch of times while I’m eating. And HT’s schedule is so all over the place, he’s not home for dinner half the time, and Seth doesn’t like anything and dinner has become this thankless, stressful obligation, so I slap it on the table like a short order cook and eat “what’s left.”

Kind of horrid if I really think about it. I want to teach my kids to be present when they eat. I want to have lovely conversations at dinner. Is that just a Norman Rockwell pipe dream? Does anyone really do that? What I often am at dinner is annoyed. And whooped. And so I’d rather just not bother. I don’t like eating when I’m irritated (unless it’s chocolate ice cream…then full throttle baby). Or I eat late with Todd, right before bed, nachos, buttered popcorn, etc.) and there’s a bad idea for you.

So I’m thinking I have to be the grown up here, and set the tone. Involve the kids more in dinner prep. Make a prettier presentation. Let them “get” for themselves so I’m not up and down during meals. And most definitely not wait for the man of the house to be home to feed myself. I need to treat myself with as much care as I would  dear friend.

Would I ever have Amy or Melinda over and offer them the scraps of leftover mac & cheese from the kids’ dinner plates? Or maybe give em’ a spoon and let them have at it right out of the pan, standing in the kitchen? Or serve them the crusts off a kid’s sandwich? Or give them a half eaten yogurt? Or a half eaten bowl of cereal?

I would not.

You know why?

Scraps are for hogs. And compost heaps. Not friends. I need to be more of a friend to myself.

I am not a hog or a compost heap.

That might be my new mantra.

Say it with me.

Lovingly yours,

MO’N

 

Do No Harm (Phenergan IV Push)

Since Seth’s bad reaction to his IVIG I have tried to get in contact with the doctor who ordered it. He was not there the day of the reaction. Another doctor was on call. I wanted to make sure he knew about it, and I wanted some reassurance about running the IV at a slower rate next time, and of course, I wanted to ask him about the Phenergan IV push in case, God forbid, his nurses were running it in like that without his knowledge. He didn’t return my phone message. He didn’t acknowledge my email. We have another infusion scheduled for next week, so I called again yesterday. The nurse said he’d probably want us to come in to talk to him. He doesn’t talk on the phone.

“My child doesn’t need to be examined. I need to talk to the doctor,” I said, incredulously.  For God’s sake. Riley’s orthodontist called the night she got her braces to see how she was doing. Seth has a severe reaction to an infusion and this guy doesn’t even bother to follow up? And wants us to pay for an office visit to talk to him about it? Hell no.

Somehow the nurse convinced him to come to the phone. The following is my remembrance of the conversation:

Me: I’m very disappointed that you never got back to me after Seth’s last infusion.

Him: I’m very busy. I get hundreds of calls per day. I can’t get back to everyone. I’ve got people coming from all over the country. We’re the only ones doing this for miles. I’ve got people coming all the way from Kentucky to see me. I try to get back to as many as a I can, but I can’t get back to everyone. In twenty years of doing IVIG, I’ve never seen a reaction like this. Never the vomiting and explosive (paraphrased, he said some medical term for explosive liquid) diarrhea.

Me: All the more reason to follow up with the parents, if his reaction was so rare.

Him: I think we have to consider the possibility it was the flu.

Oh. 

My.

God.

Me: He was fine before the infusion. He was back to his old self within an hour of being home. He was fine until the rate of his IV was increased. He got better as soon as it was decreased. He did not have the flu.

Him: It’s just that we’ve never seen this kind of reaction. He may not be able to continue with the infusions.

I got the distinct feeling he didn’t want to continue with me.

Me: But we were able to finish the infusion. Once the rate was reduced, we finished it and he did fine. I want to make sure that his next infusion is run at the slowest rate.

Him: Yes, we can keep it at a slow rate. And I can order Zofran (the anti-nausea med I requested last time, but didn’t get, and instead Seth got Phenergan IV push).

Me: So let’s address the Phenergan issue.

Did he really order it IV push, or is his nurse giving it the wrong way? 

Him: We’ve always given Phenergan IV push. We’ve been doing it that way for twenty years.

Scary. 

Me: But it’s no longer standard practice. A quick Google search will show you a bunch of class action lawsuits. They don’t do it like that in the hospitals anymore. My husband is a hospital pharmacist and he says it’s not been given that route in at least ten years.

Has he really done no continuing education?

Him: We’ve always done it that way and have never had any problems.

Me: If you have never had any problems with giving Phenergan IV push, then you’ve been  lucky, and you are playing Russian Roulette.

Him: We’ve always done it that way and have never had a problem.

Oh.

My.

God.

He apparently has no intention of doing it any differently.

Him: If you don’t feel comfortable with our practice, then maybe you need to go somewhere else.

Me: But you just told me you are the only game in town. Where else would you suggest we go?

Him: I’m just saying, if you aren’t comfortable with us, maybe it isn’t the right fit.

Me: Are you saying you don’t want to treat my son because I am questioning you?

Him: No, I’m not saying that.

Me: I’m not trying to be difficult, I’m trying to help you. I’m trying to help your patients by bringing to your attention what can happen if you give Phenergan IV push. GRAPHIC PICTURES MAKE SURE YOU HAVE THE STOMACH BEFORE YOU CLICK.

I want to make sure if we come for Seth’s infusion next week, that the rate will be slow, and he will get Zofran, rather than Phenergan.

Him: Yes, we can do that, but we’ll have to order it. We don’t carry Zofran typically.

Me: Okay. Order it.

We left it that we would be coming, but I’m not sure. Todd thinks we should not deny Seth this opportunity to heal. It takes three or four infusions before benefits are typically seen and Seth’s been really suffering. Todd made sure he took the day off so both of us can be there to supervise and monitor Seth. He wants to just use this place for what we need it for. We’ll keep an eye on the rate and the medications ourselves.

I don’t know. My confidence in them is lost. If Seth has another reaction, or God forbid anaphylaxis or something like that, do I trust them to save my child? It’s not in a hospital. It’s at a doctor’s office. It’s not like they can just zip him down the hall to the ER.

I feel the weight of the world on my shoulders. I am sick of being forced to make such weighty decisions. Sick of my child being sick. Sick of big ego doctors and healers and therapists and no one having a freaking clue. With few exceptions they all think they are the “answer” except there has been no answer. Seth’s incontinent. He can’t sleep. He’s too scared to go upstairs to the bathroom in our house anymore, unless someone comes with him. And the tics. The endless tics. His ribs hurt. His jaw hurts. His vocal tic is non-stop.

And while I am sick of them not knowing, I can accept it. We don’t know what we don’t know.

It’s the arrogance that gets to me.

* Professional guitarist, Diana Levine lost an arm after being given phenergan IV push.