Thursday 9 April 2015

"Fix stupid now or Hulk smash!"

It has been over a year, and we are still in hospital. As a first time mom, my life has been in hospital... I've been living in a hospital. Did I mention hospital? 
Ugh... I honestly could write a novel about hundreds of scenarios involving medical errors involving Bella. Computer, human, pharmacy, nurse, doctor, resident, cleaning staff, lab staff... Errors throughout. And all at the cost of our tough little bug having to endure pain. 

It's not fair.

Over and over I think about the pain from mistakes and errors that hurt Bella, could of been a thousand times less if Saskatchewan had the SCID screenings program. She would have been screened, and immediately sent to a qualified center to start the donor search, and most likely do the bowel surgery she needed right, first time... Not 5 times. This needs to happen some way, some how. Most of my energy is taken up right now, but I know I need to put some ounce of what ever time and energy I have left to try and get this issue looked at. Any support in this area, we will gladly accept. I want so badly for Bella's story to save newborns lives from this day on. We have to make this happen, at least for our province and hopefully more provinces in our country. 

Day +12
Living in a hospital for over a year I have seen too many medical errors. It's torture when all these mistakes happen to your child. I exhaust myself trying to prevent, prevent, prevent! And we are still let down.

Recently Bella has had horrible errors happen and thankfully she's ok. Ironically it's been with one med, Cyclosporn. 
1st issue: When the med was started iv some nurses were still giving it to her orally and I had to correct them. 2nd issue: the nurse putting this med in the wrong iv line. (Which I mentioned in a recent blog post) and 3rd: They recently overdosed Bella with this med not just once but 4x in a row. The last 2 incidents happened a day apart. Before these happened I had many many issues and medical errors that I tried to get fixed. I haven't slept because of the mistakes that have happened to Bella, I've repeatedly tried to solve these repeated mistakes... And then she gets overdosed!?!  I guess pharmacy was the only ones that hadn't made an error yet with Bella so they must of thought, "Oh! Guess it's our turn." Gaaaawd. 

I know many of you probably still have your jaws on the floor. Yes, Bella was overdosed. It is serious. That is what I am dealing with this week. 

The good news, Bella's system uses this med very well so even though the med didn't reach a fatal level for her... It could have, any overdose has that potential. And the pharmacy staff that made the calculation error is in crap. Also, this is all taken to the provincial level. 

The error was made when the pharmasicist took it upon themselves to make up a new recipe for this med in order to use less of it and not waste because Bella is currently the only patient in all of ACH on this iv med. They calculated the recipe wrong, they should of never changed it. (Waste or no waste.) Essentially they gave her the full concentrated med, not diluted which was the overdose. 

Because this med is made in pharmacy, our nurses are unable to catch the error because it comes up to the unit looking exactly the same as always, same label and all. 

Any micro grain of trust I have rebuilt with medical staff in a hospital, that I have had to rebuild and rebuild after repeated mistakes is now fully blown out of the water. It's gone. You think I wasn't sleeping before this... Just buy me coffee. 

So what's being done? Well... Oh you are probably all wondering about the physical assault charges I have laid on me now? No, I didn't lose it on anyone. I bit my toungue and handled all this calmly. I've learned (key word there... learned, meaning I've already done the 'losing it on you, call the cops' response) that reacting smart, gets a better response. 
They also made a huge mistake and know that if I did decide to smash all their heads together and go Hulk, they deserve it. Our social worker mentioned to me yesterday that her and Bella's doc had a conversation about my response. She said he has a lot of respect for me, given my reaction. 
They are just lucky Bella's ok. If she was hurt... I would go Hulk. I can only deal with repeated mistakes for so long... Actually at this point... you make one mistake that involves Bella... I'm on you like white on rice and I'm not nice. 

So, I have met with the unit manager twice and we have agreed on next step action plans. I also meet with the pharmacy manager tomorw. All the paper work to have this overdose issue dealt with has gone to all the people it needs to, the provincial level, etc. On the unit, Bella has also been now put on Primary Nursing. This is a plan that basically calls for Bella to have a list of primary nurses, and those nurses don't change. They will be the only ones working with Bella from this  day on. The conversion from the manager to the nurses today, probably went something like this, 
  "So, we've been screwing up lately and just to avoid any lawsuits, Bella's goin primary... Everyone good?  Good." 

Day +15



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