Being a nurse and yet not in charge of anything including your very own child is beyond frustrating. Knowing when procedure is broken, mistakes are made, mistakes are covered up, lies are being told and yet there isn't one damn thing you can do about it is as much a hardship as worrying about your child. Not having Mike to talk to is still so difficult. He lived it too, not just because he literally lived with us, but because his life depended on the medical staff too. That kind of understanding is hard to find. It's something that we could always take comfort in each other with knowing we both know.
Here we are in a major medical hospital, one that is awarded for it's safety as they are quick to tell you, and yet so many mistakes.... some minor, some major.......... but it doesn't matter. The phrase that I heard with Mike and his Harvard cohorts is "we take care of our own".... that's an ICU staff in a nutshell. They will even have it so turned around that you will feel guilty for speaking against them, afterall..... they are saving lives. There are other sick kids in the hospital, not just yours...... speak up anyway.
There is a patient advocate available to you, but they don't report to anyone outside of the hospital. If you try going outside of the hospital for a resolution, you need to wait until your child has been discharged.... just trust me on that one.
I list just some of them for you here:
- I always slept in a recliner by her bed so that they would have to move me to do anything with her. So knowing that nothing was done to her, remarkably their charting still reflected Medicaid rules.
- When nitric oxide was trialed in an effort to keep her body oxygenated, I was told that it was too expensive to continue and they wouldn't be wasting resources.
- In order to feed her it was necessary to put the food and meds into her intestine instead of her stomach. The tube became clogged and they couldn't use it. They wouldn't do anything about it because it was "the weekend" and they would have to call the Intervention Radiologist oncall. They refused and kept her on IV fluids instead.
- while getting nutrition in her intestines (the hole is made in the stomach but they pass a tube through the stomach into the intestines), they started at just 10ml per hour increasing by 10 every 4 hours. She made it up to 40 when I noticed the nurse preparing to give her her medication. They had switched from IV meds to "oral" meds after seeing that she was tolerating her feeds. However, the total volume of all the meds the nurse was giving was 120ml. The nurse gave 120ml into her intestine within a 2 minute time frame at most. She could not understand why this angered me. I kept hearing from the nurse and her supervisor "she needs her meds, Mom". No one except the dietician could understand my complaint of bolusing a volume greater than she was received over an hour all within 2 minutes. Consequently, Mackenzie was gagging and coughing .... they refused to see the connection.
- when attempting to give her food into her stomach instead of straight to her intestines, the nurse started the food going into her stomach and wanted to leave the tube for her intestines open to drain. When I complained I heard "we need to keep her intestines open to release the gas, Mom. You wouldn't want her gagging and throwing up". Once again, nurse and supervisor failed to see that opening up the intestines which are BELOW the stomach would essentially be getting rid of all the food they are putting in.
- while changing her adult diaper for stool they like to just throw the dirty diaper on the floor instead of using a trash can. This can lead to all kinds of problems, but this one time it was on the floor when her ventilator tubing fell to the ground. The nurse picked up the tubing and turned to me and asked "what do you want me to do, Mom?". I had been talking to Mackenzie's physical therapist at the time and caught off guard I said "she needs to breathe". In my mind that meant don't just stand there, get the ambu bag and breathe for her. Instead, she reconnected the ventilator tubing that had just fallen to the ground right next to the diaper full of shit
-housekeeping bumped her
nitric oxide tank and it alarms. The nurse in the room pages rt then
leaves the room. She continues to alarm and desat with no one in the
room but me. The interface display shows the nitric oxide is not getting
to her. 12 minutes pass before anyone comes in the room. The RT assumes
it's a superficial alarm until I tell him that she's now sating at 75
and the nitric oxide isn't getting to her. He fixes the connection and
gives her 100% oxygen. The nurse never did come back into the room.
-
Kenzie's midline was red. My sister was here with her during the night
and alerted the nurse. The nurse said it flushed fine (as a midline
likely would) and used it to give her 4am Vanco. I arrived at 0830 and
after seeing her red streaked armed and asking her nurse to have it
looked at is when I hear of the night events. Her access was pulled and
treated for thromboflubitis (sp?). The nurse who dosed the vanco did
not report off of the redness. 3 days later it's still ropey and red.
-
the nurse removed her silver impregnated foam dressing from her cvl
infected site to apply the clindamycin instead of applying it to the
staph on her cheek.
- her blood pressure cuff is
never removed or rotated. I have been taking it off for skin integrity
but a nurse hasn't for days.
- she had an EEG, the
next day I felt a hard lead still attached to the back of her head. I
removed it an mentioned the redness to the nurse.
-the
nurses had offered to get me a parent tray, the food trays pass by me,
but Nuanna at the desk has literally chased me down the hallway twice
now to tell me that the covered container of pudding from the cafeteria
is not allowed.
- while on a cpap trial, she went
down to 85% and was alarming. No one responded for 15 minutes. The
nurses response was to change the parameter so it wouldn't alarm. I
asked her not to during a cpap trial her response was "doesn't matter to
me, your the one going to have to hear it." She changed it anyway after
I fell asleep.
-
3 hours spent arguing with Eddie as ANP regarding bipap resulting in my
requesting blood gas since we were at an impasse. Her ph was 7.22 she
went back on bipap.
- when Dr. Karsies counseled me
on ECMO, my parents drove 10 hours to try to see her thinking she
wouldn't live. They were denied coming up due to the flu restricted
visitor list (That's also much longer story). It was resolved by a nurse
allowing them only to be written up for it.
- moved to H02B to continue monitoring for ECMO. First few days all care was excellent.
-
the visitor list continued to be a problem and things were exaggerated
and I contacted the patient advocate for help. For 2 days nurses and
supervisors were not allowing our Pastor to visit.
-
she was eventually not monitored as closely resulting in preventable
problems. Such as an unmonitored temp resulting in my confrontation with
the charge nurse. Kenzie's temp was inaccurately being measured and
when I corrected their method she was 102.2 not 100.2. Big difference
considering I was also complaining of redness at the cvl site.
- it took 3 days of elevated temps and my complaints until the cvl was pulled after an ID consult.
-
Picu attending denying an infection until my picture of the puss at the
insertion site. I don't believe the ID doctors would order Vanco for a
superficial skin infection.
- staph infection on
her face was also something I spent days trying to get addressed by the
nurse until I asked during rounds if we could switch to clindamycin
since it was getting worse. ID physicians felt it was connected to the
cvl infection.
-any complaints I am making are
resulting in retaliation. When I complained of the temp method, the
charge nurse instead complained about my not wearing a gown even though
she was droplet and not contact precautions. She was not friendly.
-
after taking over a week to get the visitation list modified, the
charge nurse not only refused to make the changes, she slapped my list
down on doc station in the room and sternly said "we're not doing this.
Someone will be in to talk to you". My friend was currently waiting to
come up, she went home.
- cpap sprints were
ordered as 3 a day, in 24 hours she received none. Her breathing
treatments were every 6 hours, they were consistently given up to 2
hours late. When her xray showed worse, I made a complaint. Mackenzie's
care did not improve from my complaint. But the diffuser that I had been
using for 4 days after being encouraged to bring it in from her nurse
and rt last Saturday, became their focus and they told me the RT
complained that it was making her asthma worse. Instead of reassigning
her I was told we couldn't use the diffuser. If lavender was irritating
her asthma, I find it difficult to believe that she can do her job here
with all the disinfectant that irritates me.
-Dr.
Fitch wanted Kenzie up in her wheelchair. PT was consulted and kenzie
was improving with her tidal volumes. Today, Dr. Estrada doesn't want
her in her chair because you don't put an intubated patient in a
wheelchair.
- Dr. Fitch said if Kenzie continues
on this trajectory she could be evaluated for being extubated. Dr.
Estrada told me that she is weeks away from being extubated and that she
needs a trach tube. That if she were in an adult hospital they would
have already done it.
- then there are countless
episodes of the nurses literally drowning Kenz because they neglect to
drain her circuit before moving her. This results in not only immediate
distress, but it sets her lungs back needing a higher fi02.
-then
there are countless episodes of the nurses repositioning Kenz without
untying her vent circuit from the bed rail resulting in the ET tube
being displaced.
-then there is the autonomy of
the nurses with regard to peri area care resulting in a horribly
involved yeast infection resulting in a wound care consult only to have
those orders also ignored resulting in another consult.
-then
there are some nurses documenting things that they are not doing, such
as position changes and diaper changes. I know of the false documenting
because the charge nurse tells me what they write.
-the
autonomy given to the RT has me witnessing them providing treatments
without listening to her lungs at all, let alone before or after. And no
suctioning even being attempted because they are told during report
that she hasn't had anything out of her ET tube.
-an
RT told my sister (she stayed awake all night so I could go home) that
it is because of me that she isn't getting anything out of her lungs
because I won't let them use a Yanker (bite reflex) and that I am
suctioning her all wrong. (Hard to believe I've kept Taylor alive for 8
years if I were so incompetent).
-being told "it's
too expensive to continue" and "we can't do that on the weekend" or "I
dont care, Mom. How do you want to do it" are other statements that
don't belong in any PICU, in my opinion.
- RT comes in the room to switch her cpap sprint over to
support. It was 5:15. I asked when it was started and she answered
11:55. When I said it was 20 minutes late she said it was only 10. It
took almost 10 minutes to explain to her why it would be 20 minutes late
with me pointing to the clock and counting by 5. Considering math is an
important component of her job, I didn't feel confident in her skills.
-
an RT was standing bedside checking the vent. I told her I could hear
an air leak and I thought it was coming from the MDI adapter. She
insisted it was from her mouth since "that's where air leaks". Before I
could stop her, she was putting air in her cuff. I could still hear the
air leak she went to put more air in but I was able to stop her. The MDI
adapter was open. I told her that risking the integrity of her trach
(ischemic pressure) by increase the cuff pressure instead of recognizing
the difference in sound was the wrong decision that she almost made
twice. (There is a distinct difference in sound between oral cavity and
circuit)
- rt was bedside while mackenzie was
coughing multiple times. Even with me and the nurse asking her to
suctioning her airway she didn't. The nurse went over and did it herself
while explaining to the RT that it is best to assist pulmonary
clearance while kenzie is already coughing.
-
while waiting in the hallway to speak to the charge nurse about the
assignment of her night nurse (complaints from the night before I've
already mentioned) I heard an alarm. I went in to see the nurse who had
been wiping her butt, now suctioning her airway. When she saw me she
started saying how much she was getting out of her and how "good" that
was. You could clearly see that it was all the water that she had just
dumped in her. Shortly after, Kenzie started running a temp again. I
suspect that this is a strong suspect for an etiology. If not, it's
still pretty gross.
-
infectious disease wanted to test quantitative for flu by nose and et.
Kenzie coughed and for the first time we had a decent specimen. I asked
the nurse to see if they wanted to run cultures off of it too. She told
me that they wouldn't run cultures on it because it wasn't sterile. It
was sterile.... I asked them to change the Ballard first. She also said
they would have to go deeper for a culture. This isn't my
understanding.
- nurse Stephanie
came in the room at 835 for the first time her shift. Mackenzie had
been coughing and I was clearing her airway as t nurse walked in. An
appropriate response would have been ... here let me do that for you
followed by a reminder of how I shouldn't have to or offering to get the
respiratory therapist. She did neither. Instead she attacked me
verbally by saying she is documenting every time she sees me suctioning
her. She went on to say that everyone is talking negatively about me out
there, she isn't the only one who had a problem with me. She argued,
she raised her voice, she tried to bully me argued and threaten me, and
when I spoke to the charge nurse there was absolutely no apology given.
It is appalling that she is being allowed to speak to me that way. Also,
she was in the room only to give meds after that. She spent at most 30
minutes cumulative in the room on a 12 hour shift.
-
right at shift change it was decided to move kenzie to a different
room. Because everyone wanted to be somewhere else, Kenzie's coughing
spells were ignored and her sats hung around 89 -91 for the next dew
hours even though she had been above 96.
- due to
the set up of this new room, the parent area is to the right of
mackenzie. Mackenzie is not able to turn her head to the right and I
cannot see her face. Given that she is non verbal and unable to express
herself, seeing her face is essential. It also means her vent circuit
has been laying across her body. I spoke to the charge nurse of these
concerns and was told that we could not be accommodated. I've been told
today by Karla that we can be moved, it's been almost 24 hours in this
room and we are still here
Imagine being all alone for 52 days having had all this happen and being completely ignored and bullied and retaliated against. That's what it was like. All of this bullshit on top of being scared out of my mind that my daughter might die.
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