NTI - Post ICU Syndrome - First Hand Family Account

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    Post-intensive care syndrome, PICS is a combination of symptoms that include health problems that remain after critical illness. They may persist when the patient leaves the ICU and sometimes even when they go home. These problems can involve the patient’s body, thoughts, feelings or mind and may affect the family. This is the story of one child that had an extended stay in the ICU and the effects PICS had on the child as well as the family.

    NTI - Post ICU Syndrome - First Hand Family Account

    At AACN's National Teaching Institute recently, Post-Intensive Care Syndrome (PICS) was discussed. Here is a personal account of what PICS looks like:

    Carrie was an active 2 y/o, running, jumping, getting into mischief and talking up a storm. One day, Carrie was outside playing on the swings in the backyard. Anne, Carrie’s Mom was sitting outside watching Carrie. Suddenly, Carrie was on lying on the ground - Anne ran over and picked her up thinking maybe she had fallen. However, Carrie was strangely quiet, and she was barely breathing. Anne rushed into the house, and called 911 - what was wrong with Carrie? Why was she having such a hard time breathing? She needed help. She related later that the 2-3 minutes that it took for EMS to arrive took “forever.” The paramedics quickly arrived, placed Carrie on the cart and into the ambulance. As they had concern for a partial airway obstruction, they placed her in a position of comfort, applied oxygen, and cardiac monitor and off they went...to the level one trauma center and children’s hospital. Carrie remained minimally responsive.

    In the ER, Dave, Carrie’s Dad met Anne and Carrie. They were allowed to stay with Carrie though she didn’t seem to even be aware of them. The ER resident asked what had happened but Anne couldn’t really even say the exact circumstances except that “she fell and then she had trouble breathing.” The ER attending comes in and they decide to take Carrie to the OR for an emergent bronchoscopy and intubation under direct visualization, at this time, still thinking there was a partial airway obstruction. Dave and Anne quickly hug Carrie, kiss her forehead and then watch as their precious little one is wheeled off to the OR.

    They meet up with Carrie again in the PICU where she is now on a ventilator with a central line, foley catheter and arterial line. All the tubes, the equipment, and Carrie lying in the middle of the big bed surrounded. The attending ENT MD who was in the OR with Carrie told them there was no airway obstruction and the thoughts then turn to something neurological causing this decreased LOC. So, in comes another specialist, a pediatric neurosurgeon. Off Carrie goes for MRI. Again Dave and Anne quickly kiss her foot (the only body part they can touch) and start to cry softly.

    Okay, finally a diagnosis: Chiari I malformation that acutely caused a massive stroke. Some relief that there is a diagnosis but then again, what’s going to happen? Will Carrie wake up, what needs to be done to decompress the syrinx/Chiari? Will she be the same enthusiastic little chatterbox? So many questions, so many people: nurses, techs, pastoral care, doctors of all kinds. It’s overwhelming!

    The first order of business: emergency brain surgery….oops did I forget to mention that Carrie’s vocal cords are paralyzed and that was the reason she wasn’t breathing right? So….more questions, more worry, more tears.

    Carrie comes out of the brain surgery after a compression laminectomy, remains intubated, sedated and paralyzed. Time drags on as more doctors, nurses, techs, and many students parade thru the room. Her BP is labile so she is now on pressor support. Then, she becomes febrile and is diagnosed with a UTI.

    The family arranges a schedule to always have someone with Carrie 24/7. Though they are trusting and grateful for the care that Carrie is receiving, they also know that she can’t answer for herself. And...they don’t want to miss any chance if Carrie’s condition changes.

    Soon, two weeks have passed, her incision is healing well, the sedation is lessening and it’s time to try to wake her up and see if her vocal cords have regained function. However, when they extubate her, she doesn’t breathe on her own, so reintubation is necessary and plans are made for trach/PEG. Dave and Anne are beside themselves. They are told that Carrie will need home care, nurses and lots of equipment. It’s so overwhelming!

    What to do, how to hire nurses? What about the space needed? Will Carrie ever be back to normal? Insurance coverage limits?

    Once the trach/PEG are placed, Carrie must then be sedated and paralyzed for yet another week so the trach heals.

    After this, Carrie is allowed to wake up. As she wakes up, there is much joy as she immediately recognizes her parents and other family members. She is not talking of course but is waving her arms and moving her legs too. By now a month has passed...a month in the PICU where it’s always noisy, always bright and so many strangers coming in to touch and help Carrie. However, as a 2 y/o, she doesn’t realize that sometimes these strangers have to hurt her in order to help her to get better. She becomes afebrile once again and blood cultures show bacteremia so the central line is dc’d as well as the foley catheter.

    A PICC line is inserted but within days it is noted that her arm is erythematous and ecchymotic. So, an ultrasound is ordered and unfortunately, she has a DVT. Anticoagulation is started and multiple peripheral IVs are placed.

    Over the next month, Carrie begins to recover, she starts to gain strength and she is eventually weaned from the ventilator. PT/OT/ST are all involved in her daily routine. She looks adorable using her baby-sized walker to parade down the hallway. The family starts to learn trach and PEG care and how to use all the equipment that Carrie is going to need to go home.

    Then...suddenly she is speaking. She is later taken back to the OR to have a detailed exam of her vocal cords and the family is greatly relieved that it shows they are moving again. Plans are made to downsize the trach and finally to decannulate. She must still go home with PEG tube and thickened liquids.

    At the conclusion of 2 ½ months, Carrie was deemed stable enough to go home. She would still need PEG tube feedings and therapy, but she was going home!

    However...this isn’t the end of the story. The fallout from a prolonged PICU stayed with this family.

    It is now three years later. Carrie has required multiple MRIs to assess the syrinx. She has also had another surgery to place a shunt and had her PEG tube dc’d. At 5 years old, she is an old hand at all this medical stuff. She climbs right up on the table for MRI, lays quietly and does not require sedation. She skips into the neurosurgeon’s office, gives him a hug and tells him thank you.

    Dave and Anne are still very keen on watching Carrie closely. They are hyper-vigilant if she gets a cold or ear infection.

    As a result of PICS though these are some of the effects of a prolonged PICU stay:
    • Carrie is extremely comfortable with all the needed medical procedures - much moreso than what is developmentally appropriate
    • She is very aware of her trach scar and her “extra belly button” where her PEG resided
    • Dave and Anne have had the added stress of worrying about what will happen next. They lean on their faith and their families for support
    • Though the physical scars have faded, the emotional distress caused by these events never allow Anne and Dave to completely relax, though it has become easier as time passes


    So, PICS is real - it can affect patients and their families in different ways. However, we as caregivers need to be aware that our actions, verbal exchanges and simply caring will always be remembered.

    Preventing PICS is a multi-focal process:
    • Awakening and Breathing Coordination with daily sedative interruption and ventilator liberation practices
    • Delirium monitoring and management
    • Early ambulation in the ICU, when feasible

    Treatment consists of individualized plans focusing on the deficits associated with each patient. Educate yourself on the prevention and treatment of PICS so that damage is lessened.

    References:

    Post-ICU Syndrome
    Last edit by Joe V on May 26
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    3 Comments

  3. by   cyc0sys
    This was very informative article. I was unaware of PICS until now. I have a home health patient/family, that I'm not sure exactly fits description of the syndrome, but it has made me think introspectively after reading the article.

    The patient has a congenital defect and was recently place in a medically induced coma due for several weeks, for what the parents perceive, as a medical error on the part of the physician. As a result of the treatment and long term hospitalization, the child can no longer walk, has an intolerance to activities and a diminished cognitive capacity, by way of comparison, to prior bench marks.

    To some degree, the mother has now abandoned physicians’ orders and is seeking out holistic and complimentary alternative medicines. While I support different approaches, some of her interventions are completely devoid of the scientific process and often run contrary to the basic nutrition, circadian rhythms, and other evidence based interventions.

    While I understand her over compensation and hyper-vigilance is to some extent a result of the trauma, I believe it is quickly developing into an ineffective coping strategy which is adversely effecting the sound medical treatment of her child. Any type of scientific reasoning is most often met with emotional resistance. My focus has since shifted to comfort and care measures for the patient because any other long positive outcomes are being over shadowed by her efforts.

    It has created a difficult and complex situation for which I can foresee no immediate solution.
    Last edit by cyc0sys on May 24 : Reason: grammar
  4. by   spotangel
    Good info. Thanks!
  5. by   Kooky Korky
    Great article. Thank you.

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