Friday, October 14, 2016

I hate bone marrow biopsies...

If I had any fight left in me, I would start a crusade to stop doing conscious bone marrow biopsies.

Today was a rough one for Sam.  I'm probably a little sensitive and whole lot short on patience but today's bone marrow biopsy couldn't have ended soon enough.

The room where it takes place is about 14x14 so about the size of a bedroom.  One whole wall is cabinets and then a hospital stretcher and a couple of side chairs.  Only, since we are at a teaching hospital, that room filled up pretty quick.

The medical staff didn't stop pouring in...I felt like we were being punked, like how many people can you stuff in a room...Something like this...

There were two nurses, one training the other, three Nurse Practioners.  One who's been at it a long time and is the one we are familiar with, the other two were down from the transplant unit...in training to do bone marrow biopsies.  Then, there is a Medical Assistant who runs errands for everyone, she's like the concierge.  A sweet bubbly little blond.  Nice girl.  Everyone was really nice.  Oh, and then in rolls the Hematology tech with a large cart with a million or so slides laid out on white towels.

There are trays and monitors and humming and beeping, non stop beeping because Sam's heart beat is a mere 34 bpm and every monitor on earth thinks he's dead or dying and won't shut up.  There's idle chatter and you can vaguely smell what everyone had for breakfast on the morning commute.

At the first injection of lidocaine,  his heart rate sky rockets to 65 bpm and the one NP says in a loud voice, "Hey, look everyone!  We fixed his bradycardia!" The whole room erupts into laughter, except me.

Sam had to have the girl in training do the biopsy.  She needs to go pump some iron before she does another one of these.  She struggled, and at one point, I think she tried to channel her hot yoga self and closed her eyes and just stood there with this 8" hollow needle half in his back while she took some deep, slow breaths.  She did it.  Gotta hand it to her, it didn't seem like an easy task with so much chaos going around.  I did want to offer up a little advice...she might want to put her extremely long hair in a pony tail because it kept falling in her face and not wear a fancy infinity scarf on biopsy day cause she was sweating!

Meanwhile, the nurses are training away, the other two are talking about the most recent hospital policies and the tech is interjecting into everyone's conversation and my eyes are peeled on Sam as I see him wince and jerk and groan in pain and no one but me seems to notice and I feel like I'm about to go postal.  The chaos and noise was killing me and no one seemed to be paying attention to Sam.

I finally said, "Sam, if you need another push of Fentanyl and Versed, you have to ask."

Then, someone finally says, "Oh, is this hurting?"

They gave him so much medication and he still struggled.  One guy said, "He's going to sleep for days, this is a knock out dose."

Nope, he jumped off the table, not even dizzy, just 10 minutes after the bandage was placed.

NIH had called and they wanted samples as well.  When they asked me, I said it was fine because I thought they just wanted slides from the marrow.  They wanted an extra sample of tissue...that meant three times, they had to go in his back. Unbelievable and the sample for NIH had to be twice the size that is normally needed.  I was so bugged!

As we walked to the elevators, Sam said, "I am so angry right now!  How is it okay to do this to someone awake?"  As soon as we got in the car, he turned on his music so loud...'Guns in my head...' Some crazy screamo song.  He was one angry boy and seemed to have no traces of Versed or Fentanyl in his body.  It was not a good morning. So different from Spencer's experience.  His was calm and methodical, Sam's was like a frat party.

Before everyone but the nurses cleared out, I said, "This is not going to fly for Shelbie's bone marrow biopsy.  We are going to have to figure something else out."

On the upside...Sam's liver enzymes are coming back down which is a big relief.  That's all we know for now.  Tonight, he is managing the pain alright.  He's a tough kid like his brother.

Even at Seattle Children's, my least favorite hospital for biopsies, they at least gave them Propofol which knocked them right out and 20 minutes later they were off the table, staggering out.  It makes no sense why they can't do that.  Every time I ask for a reason why they have to be awake, they tell me it's because they need to be able to communicate with them...They had nothing to say to him today.  It's a pile of rubbish. It's not like this is brain surgery.

And again...if you are doing a procedure while your patient is awake, you better zip up the commentary and stupid remarks and dumb jokes.  The patient is probably pretty scared and they don't want to hear your mouth running.  They want to be reassured and know that someone hears their little wimpers of pain.  Arghh...

I did see something I've never seen before...Spicules.  Sam's marrow just glistened like it was full of super fine glitter.  It was full of spicules.  The spicules that glitter are actually tiny fragments of bone which means the sample came right from the center of the bone and was a good sample.  So, that's awesome.  Hopefully, we get some good stable results.

Well, I'm going to nurse this fever that won't go away!
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5 comments:

  1. And my heart breaks for you, and for Sam.. just shattered to hear this! I think this experience deserves a call into the hospital care manager. I know at Primary's there is a healthcare case manager that I did call just once. I don't often drag out my mean mom personality.. it takes a lot.. but I have done it a few times. Once a Primary's and once with Jordyn's infusion nurse team. This is unacceptable.. teaching hospital or not, there should be a level of care given to the patient, not laughing, joking, fun talk as he's getting a SERIOUS procedure done!! I'm outraged for you!! Kathy I love you guys to death..but I just can't read this, and not want to go crazy calling and demanding better care for you all. Sorry you don't need my vent on top of your problems, but really I just want to come with you and be the mean mom for you. WOW...I still am just floored that this was allowed to happen... and the long hair not tied back.. seriously!!

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    1. I know, it was really crazy. The thing is, this is the standard for bone marrow biopsies in adult medicine. For 18 years, we were spoiled in pediatrics. Apparently, once you become an adult at the ripe old age of 18, you know longer feel pain so it's okay. I hate bringing out my cranky mother bear side too. They always send us a questionnaire to fill out about the procedure so I will for sure address it there but I'm waiting to get Shelbie's out of the way before I raise too much trouble just because I don't trust people these days. I also pulled the NP aside who we have been dealing with and told her that this couldn't happen for Shelbie's biopsy. It flat out can't. I'm also going to beg my friends at Madison to let us do future bmb here. It is so much better here. Thanks for validating what I was feeling. You get it! And why they don't wear some something over their street clothes is beyond me. And the hair! Aye, aye, aye...

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    2. You are so right..its always good to be careful when there are future dealings with the same people! I can't believe they just think that at 18 its all good that it's a magical # and wahoo.. you can handle this!! I agree I try to do as much as possible here. I am spoiled I like my local hospital much better, along with my radiologist peeps. I am soooo validating you everyday!!! I think this "casual" society behavior is overlapping far to much into medicine for my comfort level! I really like doctors & nurses to look like doctors & nurses...scrubs, white coat.. maybe a stethescope thingy around their neck.. ya know.. whether I need it or not..look the part..make me feel like if I crash you can bring me back!

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  2. Yes, that's what I've been trying to put into words, the medical world has become too casual. I like the white coat and scrubs. It makes me think they are 'all in' not just passing through and hope they don't spill anything on their Liz Claiborne pants. When you deal with chronic things, there is a feeling that happens when you enter a hospital or clinic...like all the King's Men and all the King's horses have arrived to put you back together or at least unload the burden on your shoulders. At least for me, it's this feeling of relief, of being able to breathe for one minute because someone else is here to keep watch. Someone who knows what they are doing. Someone capable and caring...That feeling doesn't happen as much now. I feel like I have to watch for mistakes and babysit.

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  3. I think between us, we could both write complete novels of the "loss" of faith in the medical world, the things that have happened and shouldn't. I wish for things like being able to walk into treatments, and knowing that someone else is in charge.. that for just a few moments in my single mom state, I can just hand over the reins of this crazy train, to a trained professional.. but I have found that I can't. I watch like a hawk, I keep a log during Jords infusions of my own stats, and yes I really do feel like I babysit the nurses and doctors.

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