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Working This Out 2 – A Few More Details

From Mark:

This all began out of the blue today when the RT supervisor came in and told us we can’t do hands on care. The reasons offered are (1) liability; and (2) I am a lawyer and I intimidate the staff by taking control of her care. What utter crap! I guess all concerned lawyer parents at Kaiser can’t get quality care because we intimidate medical PROFESSIONALS.

This RT supervisor was standing there when I gave Getty a suction. He tried to prove his case that his staff was better than me by telling me I was suctioning Getty incorrectly. I quickly reminded him that it was HIS RT STAFF who taught me how to suction. So if I’m doing it wrong, it doesn’t speak very highly of his RTs. I also reminded him that it was his RT that caused Getty to desat the other day, not me. It was another one of his RTs who come into the room this morning and almost caused another dump by turning Getty’s head without suctioning first. We saw what he was about to do and stopped him.

He gave me his phone number and generously asked me to call him, even at 2 a.m., if I had any problem. I think I want to call him at 2 a.m. each day over this holiday weekend just for some giggles because I’m up anyway.

He also said he needs to swap out all of our home equipment with “hospital grade” equipment that’s been inspected and calibrated according to standards. Oh … you mean this home equipment we’ve been using in the PICU for a week already isn’t good enough? Oh, and Kaiser doesn’t even have a cough assist machine of its own to swap out with our home equipment. They have to order one, and it’s a holiday weekend. By the time it arrives, Getty may be discharged.

Kaiser did bring in its own Trilogy bipap. However, they don’t have a humidifier, so the Kaiser bipap is just sitting in the corner while they order a humidifier, too. Maybe it will come in the same box as the new cough assist.

Anyway, we figured out how to be hands on for part of Getty’s treatments. The doc’s order says that the staff has to do the “acute care” treatment, but we parents can do our own “intermittent care” cough or suction in between the acute care treatments. The acute care treatments are every 4 hours and begin with 4 sets of 5 coughs on the cough assist machine followed by the percussive vest.

So, a couple of minutes before the scheduled acute care treatment begins, Kate and I do our own “intermittent” cough and suction with 4 sets of 5 coughs. Then the staff can begin their acute care treatment immediately after our intermittent cough and suction is done, but they can skip the first 4 sets of 5 “acute care” coughs and go straight to the vest because Kate and I just gave Getty 4 sets of 5 “intermittent care” coughs. This works for now because we know by the time the staff gets their hands on Getty, she will already be cleared of any secretions that might cause a saliva dump into her throat.

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  • amanda says:

    I just… don’t even know what to say. I cannot believe that they can treat a patient and her caregivers this way. I am so, so, so sorry that you are dealing with this when you should be able to focus on other, more important things.

  • Evidently, you being a lawyer doesn’t intimidate them ENOUGH. Go Medieval on them if you have to!

  • Takoa says:

    So many questions! The three times I was there and each and EVERY Kaiser employee that walked into Getty’s room asked a question about care to you and Kate; always with the preface, ” You two know her best and I’m learning from you.”
    Has Kaiser now decided to stop learning?
    The supervisor apologized for her employees deliquent, irresponsible care that caused Getty to stop breathing and then turned around and defends that employee and all other inadequately trained staff by creating multiple situations that put Getty’s LIFE, not just health, in grave danger?
    You’re intimidating? That was somewhat laughable Mark…. What you are is an educated, powerful loving, hands-on FATHER. If that is intimidating to them, they may need to attend some counseling sessions about where they’re own family dynamics went wrong.
    Is there a possibility that you ask that she continue to receive care at home with a nurse? Studies show patients recover more quickly in their home environment AND you wouldn’t be intimidating people.
    They could close their doors and continue to choose to not learn and harm another child or family~is that what they are THRIVING on?

  • Anastasia L. says:

    I am so sorry that you have to put up with this crap. Not going to lie, it is CRAP! I love you all and miss you and thank God every day that we have Getty and Getty has you. I am not an advocate and I don’t know how much help I would be but if you need anything I am just a phone call away.

    With all my love.

  • A's mom says:

    I’m so sorry you are dealing with this too. I swear every day it’s harder and harder to work there and they make it just as hard for us to help the families. They are afraid of everything, going the extra mile. So sorry you are in the middle of it.

  • At First Sutter Memorial did not have a cough assist – when Malena was admitted for the first time with pnenomia – but were very familiar with the vest and respitory care for the most part – The most consistent thing I have to say about Sutter Memorial is there in there for the families. Honestly – they’ve been great when she was born – great every time Malena is in a serious emergency – I use a key word _Respitory distress – and they waste no time preping her for the PICU – This thing with Kaiser is an eye opener —-Good for you for getting the their face. It’s your GETTY and I guarantee you – they’ll be more prepared the next go around. Pretty awful family care.

  • Anastasia L. says:

    I wanted to ask you to please give those few Staff members and Nurses that have been doing a great job and careing for Getty the way that she deserves a message from me please: I love them and pray for them every day! 🙂 Keep up the awesome work! Thank you!

  • AUNTIE JAMA says:

    We totallly agree with you, Takoa – your comment was great! Can not believe that the supervisor would even bring up~ YOU INTIMIDATING THE STAFF!! OMG – are they not there to care for the medical needs of the patients as “MEDICAL PROFESSIONAL” – who made a pledge upon completion of their medical training! Maybe the supervisor should spent some time reviewing this pledge with his staff and also refreshing his memory concerning KAISER’S MISSION & VISION STATEMENTS! So sorry you are having to deal with so much stupidity and senseless stuff ~ home equipment not being good enough but yet they don’t have it available ! WOW~ Kaiser – you’re not looking or sounding good!

    Love you guys and you are doing an incredible job caring for and protecting our PRECIOUS LITTLE OWL!!!! HOOTS TO ALL OF YOU! Getty ~ you will be home soon with your Cooper! Lots of hugs & prayers coming your way from all directions………..Auntie & family

  • Nurse Kim says:

    I hate that it came down to this but I’m super glad you were able to get an MD order to at least help straighten it out! Wishing a speedy recovery!

  • Kim says:

    Well said Takoa. I couldn’t agree more with what you said. I am speechless over the ordeal that you have all been through. I hope that the medical team involved can swallow their pride and learn from this. There is always more than one right way to do things and you both know Getty more than they ever could. Everyone has the same goal, to get Getty healthy and home. I hope they can all keep this in mind. So sorry for everything you’ve endured. Stay strong and keep up the fight, not only for Getty, but for any SMA child who follows behind her.

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