Our Journey Through The Pediatric Intensive Care Unit

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Our Journey Through thePediatric Intensive Care UnitPICU DIARY

DiaryYour Pediatric ICU (PICU) journey is like a road trip, with many differentemotions, experiences, and things to see along the way. Keeping a writtenrecord of the ICU stay can help you and your family remember and process theexperience. This diary has many different sections to help you and your familywrite down your questions and experiences.Table of Contents:Your ICU Diary - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 2Get to Know Me - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 4Memories (photos) - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 5The Road Map - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 6Experiences you may have- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -7Information Highway- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 8Calendars - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 13This is why I am here - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 14My journey so far - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 15Coloring page - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 36Love notes from families & friends - - - - - - - - - - - - - - - - - - - - - - - - - - - - 37The family’s experience - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 38Emotions the family may experience - - - - - - - - - - - - - - - - - - - - - - - - - - - 39Self-Care Street - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 40Parking Lot - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 41The family’s journey so far - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 42Collection of business cards - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 63Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit-1-

Your ICU DiaryWhat is an ICU Diary?An Intensive Care Unit (ICU) diary is a record writtenby the patient’s family in everyday language to helpthe patient understand what has happened duringtheir stay and to help the family cope with thesituation during this difficult period. A stay in the ICUcan weaken the patient’s perception and memory.Some patients have no or delusional memoriesafterward. Therefore, it is important to keep a recordof the patient’s everyday condition.Who writes the ICU Diary?-You (the patient) and family members.-PICU team: physicians, nurse practitioners, nurses, therapists, socialworker, case manager, child life, etc.What can we write in an ICU Diary?-The reason and the events leading up to the ICU admission.-Daily status of the patient.-Medical measures.-Daily procedures or treatments.-Visitors.-Recovery milestones, such as first opening the eyes, standing or sitting ina chair, coming off the ventilator, etc.-Anything that may interest the patient (for example, visitors, activities).-Notes on discharge or transfer from the ICU.Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit-2-

Why is an ICU Diary important?-The ICU diary and photographs are a written record to help the patienthave a true memory of their stay in the ICU.-The dairy helps the patient’s family address how they feel during thepatient’s ICU stay.How do we use the ICU Dairy?-Try to make an entry each day.-Write the date and time for each note.-Focus on the content and not the spelling or handwriting.-Include photos; make sure the patient is in the picture with you and thepeople caring for them (please ask healthcare workers if it is okay withthem to be in the photo).-Encourage the patient to provide input, such as paint, fingerprints,stickers.-Continue writing for some time after the patient is transferred from theICU.Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit-3-

Get to know meUse the section below to provide information about yourself and your family,this will help you remember your stay in the ICU.Photo of meMy name isI like to be calledAbout my family:My favorites:Food:Music:Color:Sport:TV show:Activity:Movie:Pet:Book:Hobby:Things that cheer me up:Things that bother me/ stress me out:Other things that I would like you to know about me:Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit-4-

MemoriesPhotos of me and my family during my stay in the ICU:Pediatric Intensive Care Unit (PICU)My Journey Through the Pediatric Intensive Care Unit-5-

The road mapPediatric Intensive Care Unit (PICU)My Journey Through the Pediatric Intensive Care Unit-6-

Experiences you may have Agitation – A feeling of aggravation, annoyance, or restlessness brought onby provocation or, in some cases, little to no provocation. Sedation – Reducing irritability or anxiety by administering sedative drugs,generally to help with a medical procedure or test procedure. Pain – An unpleasant sensation that can range from mild discomfort in onespot to agony. Weakness/ Difficulty moving – The inability to move in your environmentwith ease and without restriction. Delirium – Delirium is caused by an imbalance in the brain. It can be due to anumber of conditions, including infection, drug toxicity or withdrawal, andmetabolism changes. Some of the signs and symptoms of delirium include:o confusiono agitationo excessive sleep or lack of sleepo restlessness and nervousness Anxiety – A feeling of apprehension and fear, characterized by physicalsymptoms such as palpitations, sweating, and feelings of stress. Depression – A mood disorder that causes a persistent feeling of sadnessand loss of interest and can interfere with your daily functioning. Infection – The invasion and multiplication of microorganisms such asbacteria, viruses, and parasites that are not normally present within thebody. Pressure Injury – A localized damage to the skin and/or underlying softtissue usually over a bony prominence or related to a medical or otherdevice.Pediatric Intensive Care Unit (PICU)My Journey Through the Pediatric Intensive Care Unit-7-

Information HighwayWe call this next section the “information highway” because itcontains all of the important information about what you can expectto see and experience during your hospital stay. There is spacebelow each section for you to write. This will help you rememberyour stay in the ICU.Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit-8-

Information HighwayWhat is mechanical ventilation?A ventilator is a machine that helps move breathable airinto and out of your lungs. This is called mechanicalventilation. When you feel sick, you may need extra oxygensupport, so the ventilator helps you breathe.Share your ventilation story in the space below Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit-9-

Information HighwayWhat is sedation and painmanagement?When you feel uncomfortable and agitated,sedation is what keeps you calm and helpsyou sleep. The medications used forsedation are called sedatives. Thesemedications also help you manage yourpain.Share your sedation story in the space below Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 10 -

Information HighwayWhat is immobility?You are resting in bed most of the timewhen you stay in the hospital. This is calledimmobility. You may lose your muscle mass,strength, and/or lose the range of motionsin your joints. You may also have poortolerance for activity. Therefore, you willneed to continue to move your body tomaintain muscle strength. Your family members or clinicians will help moveparts of your body to help you prevent or reduce joint stiffness and maintainfull of range of motion.Share your mobility story in the space below Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 11 -

Information HighwayWhat is delirium?The symptoms of delirium are: Confusion Agitated Unable to pay attention Restless Poor sleep pattern Hallucinations Interacting lessShare your delirium story in the space below Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 12 -

CalendarsThese will help you keep a record of your stay in the ICU, write a short note foreach day to help you remember your onth:SundayMondayPediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 13 -

This is why I am here.Write a little bit about why you think you are here; this may help you rememberyour stay at the ICU later.Today the date is / /Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 14 -

My journey so far Today the date is / /Share a little bit about your ICU journey in the space below.Comments from your PICU team:Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 15 -

My journey so far.Today the date is / /Share a little bit about your ICU journey in the space below.Comments from your PICU team:Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 16 -

Coloring PageThis is a picture for you to color:Peaksel / CC BY-SA ediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 36 -

Love notes from families & friendsThis is a place for you to create a collage out of cards from families or friends:Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 37 -

The family’s experienceThe family can be impacted in many ways when a loved one is in the ICU: Mental health – Family members with a critically ill child may experienceshort or long-lasting emotional effects including:o Stresso Anxietyo Depressiono Post-traumatic stress disorder (PTSD)o Complicated grief Social health – Family members may experience a change in their previoussocial life such as:o Less time spent with the sick child’s siblingso Time away from their jobo Less time for recreational activitiesPediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 38 -

Emotions the family may experienceDuring a loved one’s stay in the ICU, the family may experience a “rollercoaster” of emotions. This is because like a roller coaster, your ICU journey mayhave lots of ups and downs.My feelings Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 39 -

Self-Care StreetWe call this section “Self-Care Street” because it is like a path for you to followto take care of yourself while in the ICU.Negative and unrealistic thoughts can cause you distress and result inproblems. When you suffer from emotional distress, the way that youunderstand situations becomes skewed (distorted), which has a negative impacton the actions you take (see the diagram below). Thus, it is important to beaware of negative thinking and behavior patterns that reinforce that thinking.Cognitive therapy helps people to develop other ways of thinking and behavingto reduce feelings of distress.The diagram below helps you to understand how your thoughts and feelingsinfluence your behaviors.How can I take care of myself?Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 40 -

Parking LotWe call this section the “parking lot” because it’s a good spot for you to pauseon your ICU journey and reflect on any questions you may want to discuss withyour care providers.Questions I have Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 41 -

The family’s journey so far.Your family can share a little bit about the ICU journey in the space below.Today the date is / /Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 42 -

The family’s journey so far Your family can share a little bit about the ICU journey in the space below.Today the date is / /Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 43 -

Collection of business cardsThis is a place for you to collect business cards:Pediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 64 -

Don't get hung up on the hard times, thechallenges. Tell your story by highlighting thevictories. Because it's your victories that willinspire, motivate, encourage other people tolive their stories in grander ways. IyanlaVanzantPediatric Intensive Care Unit (PICU)Our Journey Through the Pediatric Intensive Care Unit- 65 -

Disclaimer: This document contains information and/or instructional materials developed byMichigan Medicine for the typical patient with your condition. It may include links to onlinecontent that was not created by Michigan Medicine and for which Michigan Medicine does notassume responsibility. It does not replace medical advice from your health care providerbecause your experience may differ from that of the typical patient. Talk to your health careprovider if you have any questions about this document, your condition or your treatment plan.Author: Shu-heng Wang, BSN, RN; Tonie Owens, MSN, RN, CNSReviewers: Abigail Johnson, Ph.D., ABPP; Laura Baker, BSN, RNPlain language editing by: Karelyn Munro, BAAcknowledgment: Rachel Zeichman, Marketing Manager; Katie Riker, DPT, PT;Lena Arend, MPH, LMSWStretching image via WikiHow: ithPhysical-TherapyIyanla Vanzant quote is exempt from copyright license.Patient Education by Michigan Medicine is licensed under a Creative Commons AttributionNonCommercial-ShareAlike 4.0 International Public License. Last Revised 03/2020Pediatric Intensive Care Unit (PICU)My Journey Through the Pediatric Intensive Care Unit- 66 -

See if you canfind all of thesefigures when youvisit C.S. MottChildren Hospital

Pediatric Intensive Care Unit (PICU) Our Journey Through the Pediatric Intensive Care Unit - 1 - Diary . Your Pediatric ICU (PICU) journey is like a road trip, with many different emotions, experiences, and things to see along the way. Keeping a written record of the ICU stay can help

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Our Journey Through The Pediatric Intensive Care Unit

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