Surviving ICU

Surviving ICU: A Family's Guide to the Intensive Care Unit

Having a child or loved one in the Intensive Care Unit (ICU) is one of the most stressful experiences a parent or caregiver can go through. We know. We spent 14 long days in the Pediatric ICU with our son Felix in the summer of 2007.

This booklet is written for parents, by a parent. The information is also useful for older siblings, grandparents, close friends, ICU staff, and any other people who might help you and your child survive your time in Intensive Care.

Intention

This booklet is offered with the hope that it will make your your time in the Intensive Care Unit less painful. The information below is intended to help you and your family overcome the trauma of having a child in Intensive Care. It is offered to help you stay as balanced and healthy as possible, so that you can best support your child's care and recovery.

First Things First – What is Happening to My Child?

A lot goes on in the ICU, all of it focused on helping your
child survive. Every team-member shares that primary goal, and every activity is undertaken to give your child the best possible chance of recovering.

Core Mission

“Through the practice of the most dedicated, up-to-date and professional medical care available, the staff of the Intensive Care Unit works ceaselessly to keep your child alive, so that he or she can heal themselves of injury or illness to the greatest extent possible.”

The practical information in this booklet supports that core mission, and enables you to participate with the ICU team for the highest good of your child.

Operational Mission

The operational mission is the practical way that the ICU team helps your child survive. It may at times appear chaotic in Intensive Care, but the work of the ICU team is actually very focused.

The ICU team works around the clock to keep your child alive by supporting their body's ability to preform critical life functions such as breathing, fighting infection, and more, until such time as your child can safely step down to a less intensive unit of the hospital.

That may seem like a mouthful, but in short, the ICU team works to make
sure that your child's vital body functions keep working. By supporting
your child's body in this way, your child can devote more energy to
healing and recovery.

The team works towards stabilizing your child and ensuring that they can perform most or all of these vital functions on their own in a safe and healthy manner. When those goals are accomplished, your child will be able to step-down to a less-intensive unit of the hospital, and eventually go home.

Truth Statement

Your child is in the ICU because of life threatening injuries or illness. The ICU treats only the most critically needy children in any medical setting. While nearly all children will survive the injuries or illness that brought them to the ICU, some will die, despite the most dedicated efforts of the entire ICU staff.
Your child is a dear and precious individual, and while we celebrate each child who recovers and steps down from this unit, we also deeply mourn those children who do not, and we mourn too, for the grief that their families must suffer.

A Parent's Survival Guide
Your first, and almost sole concern, will naturally be the wellbeing and survival of your child. To best dedicate your energies to helping your child and family survive, it is crucial that you stay as sane, as balanced and as healthy as possible. This is not an easy task. It is traumatic to see your child in such a critical condition. Bad things seem to happen quickly, while good things take time.
If you are in the ICU because of a sudden injury or illness, you are probably totally off-balance. If you are in the ICU (again?) because of a chronic condition, you are probably totally exhausted.
In the ICU, your child is receiving the best care possible, around the clock. One of the best gifts you can give our child is to stay healthy yourself. This gives your child an anchor of love and support to hold onto, and can help them survive. Even if they are unconscious, they can feel your presence. Being able to reassure them that you are well, gives them one less thing to worry about.
To stay healthy for your child, it's smart to take care of the basics first.
Rest, Water and Trust
Taking care of yourself in the ICU is harder than it seems to someone who hasn't spent a second there with their child. There are fears and distractions and machines and your beloved child all calling for your attention. In our experience, we found we had to work hard at being good to ourselves. You might find some of these suggestions helpful:
Make sure you drink enough water. As simple as it sounds, this is important; forgetting to do so will simply make it tougher on your already stressed body.
Trust the nurses and doctors who are caring for your child. Anyone allowed to work in an ICU has gone through rigorous, advanced training. It is strenuous work, and only those people dedicated enough to want to care for critically injured children ever make it to the ICU. Their sole aim is keeping your child alive and healing. By trusting them, you can let go of some of the anxiety and fear you most likely feel.
Breathe. Try to breathe consciously. Even if it is two slow, deep breaths in the hallway, breathing helps you cleanse your body of toxins and rejuvenates your flagging energy.
Try to rest. It's nearly impossible to really rest during a traumatic crisis, but it is vital that you take time to recharge. If you are staying in the ICU, ask the nurses when a good time to rest is. They will help you find the right moment to slow down. If you're staying at home, or at a Ronald McDonald house, try to keep up as much of a routine of sleep, bathing, and self-care as possible.
Feel welcome to pray. Even if you do not have a personal spiritual practice, or a house of worship of which you are a member, prayer can be very powerful. It will let you surrender your fears and invite new healing into your life.
Connect with your community. Even if it's one person, reach out to others who can support you, and help you survive your time in ICU. In the end, you have to find your own path to making it through, but reaching out to others can bring immense comfort at times of greatest distress.
Empathize Towards Yourself
If your child is in the ICU, you are going through trauma yourself. Not only are you witnessing your child in a grave and serious condition, you are likely not eating well, not getting enough sleep, and are having most of the routines of your life terribly disrupted.
Be kind to yourself. Give yourself every break you can imagine. If you can't get your hair brushed, or your think your clothes are rumbled, or you if forgot a meeting or phone call, forgive yourself. If there ever was a time to cut yourself some slack, this is the time.
Give yourself the space to grieve. Give yourself the space to be afraid, to cry more deeply than ever thought possible. We did all that. Sometimes, we didn't feel like we had any choice but to break down completely. Grief is so much a part of being in the ICU, that it's wise to give it its time.

One part we did learn about grieving is that it is wisest to let the huge emotions have their way with us outside of the ICU. If you feel that you are about to “lose it”, take yourself out to the hallway, to the chapel or some other quiet space, and let go. Don't be self-conscious or embarrassed: deep grieving releases many fears and gives a true cleansing.

Breaking down in the ICU will likely distract the nurses and doctors from attending completely to your child –after all, they will have to keep an eye on you, too.
Call on friends, church members, neighbors, colleagues and ask for help. Ask them to come sit with your child while you take a walk to the chapel to cry; ask them to watch your child so you can sleep, or get a cup of tea, or shower or whatever you feel you need.
Moving Toward Acceptance
Having a child in the ICU is one of the scariest things that can ever happen to a parent and a family. Fear, despair, hope, confusion, denial, anger and guilt are just some of the strong emotions that sweep over you when your child is critically hurt or ill in the ICU.
One of the hardest tasks we had to face was accepting what was really happening. We didn't want to admit that our only son was in a coma, that no one could tell us whether we would ever awaken, or whether he would even survive. We didn't want to face any of that!
But what we wanted, or didn't want, didn't change a thing. The truth of our trauma continued no matter what we did or thought or felt or wished for.
In time, we simply had to Accept.
Moving Toward Caregiving
It was unbelievably hard to accept what had happened to us. But we did. There was no magic was to get there, no magic way to turn our focus away from fear to what was really happening in the present moment. Fear, like hope, deal with what might (or might not) happen. We needed to focus on what was really happening. We had to return our attention over and over again to what was going on in our ICU room: “our son is still in a coma; he is still breathing, with the help of the ventilator; our son is still alive.”
That last truth was the most profound: “our child is still alive” and if your child is in the Intensive Care Unit, your child is still alive too! No matter the huge fears you have tasted, no matter the despair that might swirl around you, your child is alive.
You can care for your child, right now. Accepting the truth for us had two very real benefits:
it makes less room for fear and despair to live in your life
it lets you focus on what you can do to help your child, right now.
Helping Your Child, Right Now
One of the crucial lessons we learned in the ICU was that by allowing grief to have its time, by striving to accept our situation, we were finally able to get down to doing something. It's agonizing to spend so much time in Intensive Care without having specific tasks to help your child. Everyone is so busy so much of the time. We found, that when it came down to it, there was a lot we could do to help our son recover. Here are some things we tried that you can do for and with your child, and on your child's behalf:
rub your child's feet to help with circulation and let them know you are there
sing to your child
bring in your child's favorite stuffed animals (even if they are much older)
bring in pictures and drawings from home
play your child's favorite music; bring in different types (calming, upbeat, stories)
read aloud your child's favorite books
hold your child's hand and tell them stories
put cool wash cloths on your child's forehead when feverish
help the nurses turn your child
help the nurses change your child's diapers
help the nurses bathe your child
tell your child about his or her siblings; reassure your child that they are fine and taken care of
take care of your child's siblings so your child in ICU doesn't have to worry about them
pray for and with your child
seek out the support and help of your friends
write in a private journal or an online family support site
take patient notes, observe and ask a lot of questions
No One Knows What Will Happen
No one knows what will happen to your child. This is one of the most stressful aspects of being in the ICU. Being present allows you to deal with the truth as it emerges. It shields you from false comforts, but also lets you push aside distracting despair.
We found, that sometimes all you can do is breathe, and pray, and stay present with your child and the critical situation they are in.
You have our deepest blessings.
Intensive Care Explained
Your child is gravely ill or seriously injured; only the patient's most seriously in need of round the clock medical care are admitted to the ICU. The ICU team focuses many resources on each child, dedicating doctors, nurses, and therapists to their care.
The ICU is a team-oriented hospital setting. Many people are involved in the care of your child, and many are needed because of their specific areas of expertise.
ICU Overview
As intense as it is, the ICU is focused primarily on a small set of very critical tasks. Most important of these are:
ensuring that your child continues to breathe as well as possible
ensuring that your child's blood continues to circulate throughout the body
ensuring that your child has the least possible chance of infection
helping maintain your child's fluid levels
helping your child mend any wounds as quickly and thoroughly as possible
providing nutrients and sustenance to your child.

Often, all these are occurring at the same time, and you as a parent will witness many activities which may not be clear to you at first. If you ask a lot of questions, and pay attention to these  critical areas of care, you will better be able to follow your child's progress.
Breathing
Your child's breathing may need to be externally supported via a machine called a ventilator. The ventilator is a tall, square machine that stands next to your child's bed. It moves oxygen and other breathable gases into your child's body on a continual basis. This breathing support will remain part of your child's round the clock care until your child can breathe by themselves.
The ventilator is checked regularly by a Respiratory Therapist, who works with the nurses and doctors to ensure that your child is getting the best breathing support possible.
Blood Circulation
In extreme cases, it may be necessary to support your child's heartbeat artificially. That can be done by a pacemaker, an ECMO machine, drug infusion or other therapies.
In most cases, your child's heart will be beating on its own. The heart's primary function is to move blood through the body, ensuring that all cells from head to toe receive enough of the oxygen brought into the body through the lungs.
The ICU team will use their own observational skills as well as rely on continual monitoring to ensure your child's heart is beating at the optimal rate, and that all other facets of your child's heart health are as strong as possible.
Infection Prevention
Nearly every child in the ICU is at risk of infection. This is due not only the the wounds many children come with to ICU, but due to the intense and often invasive nature of the treatment your child is receiving.
The ICU team is extremely careful about preventing infection. They are also very watchful for any signs of infection, which can be checked by physical exam and laboratory tests. If there are any signs of an infection, the team will determine which antibiotics or other therapies are best called for. Some children in ICU are often given preventative course of antibiotic treatment.
Finally, all team members know the importance of hand-washing, wearing gloves, using disinfectant lotions and other techniques, to ensure that your child heals in the cleanest environment possible.
Maintaining Fluid Levels
Your child in ICU most likely cannot eat or drink on their own. Nor can they use the restroom. It is critical for your child's health that he or she have enough fluid in their bodies, so the critical care your child is receiving will likely include one or more intravenous (IV) drips of salt water (saline) and a number of crucial supporting elements such as sodium, potassium and the like. This infusion of fluids will help your child maintain a normal balance of blood, urine, CSF and the like. To ensure that liquid wastes are removed, your child may either wear a diaper, or have a Foley catheter inserted into their bladder to drain urine.
Wound Care
Taking care of any injuries or wounds is an important part of ICU care. This involves not only injuries sustained before being admitted to the ICU, but the sites of IV's or other places on the body where a break is made in the skin as part of treatment.
Also, the staff are fully attentive to keeping your child's skin and body as healthy as possible when the severity of injuries or illness requires a lengthy stay in the ICU. They will regularly turn and wash children who are not mobile, to ensure cleanliness as well as  reduced risk of sores or infection. This, and other measures, helps your child's body heal its own wounds as surely as possible.
Nutrients and Sustenance
If your child's stay in the ICU extends more than a few days, the team will begin considering ways to provide additional sustenance to your child. While water and fluids need to be replaced right away, it may be possible to wait a few days before starting any of the various methods of getting nutrition to your child. These include as possibilities: a tube through the nose or mouth into the stomach to deliver liquid “food”; a tube through a hole in the stomach to provide the same; or, an infusion of proteins and fats which can be administered through an IV line directly into the bloodstream.
Dealing with Fear
Every parent instinctively knows “the nightmare” --that primal dread that something dire and serious will happen to one of our children. That fear engulfed me within seconds of seeing my son lying bloody beneath a tall tree, and it continued to be near throughout our entire time in ICU.
Fear comes in stages. The first fear to hit is the ancient fear deep within your being that you can do nothing about. It is the fear of shock that will set you running or wailing or whatever in the face of trauma or attack. It is ancient survival hard-wired into our entire makeup. In time this often gives way to numbness, shutting down, as the magnitude of the threat reveals itself.
This gives way to the Intellectual Fear, where your mind begins to catalog all the different scenarios and possibilities. Once these take root, though, our imagination kicks in, and we come to the third stage of fear, the kind of fear we can deal with: the Fear of Imagination.
Fear of Imagination
This fear is not being afraid of imagination, but rather is a fear that is fueled by the depth of our own imagination. With this fear, all the horrible possibilities explode like a storm inside of us. Each one demands our attention. Each fear wants us to look at it, to drench ourselves in the whole cataclysm of its potential.
The most important and powerful truth about this fear is simply that it is coming from our imagination. No one knows what will happen with your child. No one. Each fear is a possibility, nothing more. It is something which has not come true, and may never come true. Knowing this, it is possible to fill your being with things other than fear, and leave fear no room to bring you to despair.
Replacing Fear
Every person has to deal with fear themselves. No one else can do it for you. But we did find some strategies that helped us master fear, and return from that to helping our son.
Something i wrote on our fourth day in the ICU, when our son was still in a coma with no signs of returning to consciousness, remains helpful even today:
the second lesson was the most valuable, and one that is burned into my soul for the rest of my days. It is this. in life you have three choices. you can hope, you can fear, or you can be. that's it. the first two are fantasy. only the last is what is really true.
This offers a possibility for overcoming fear: by staying present with what is going on, by filling our time and attention with noticing what is real, and acting to help our child recover, we are able to crowd out fears and give them nowhere to reside.
This possibility is supported by the key truth about fears. They are imaginations. They are not reality, but possibilities. If you dedicate yourself to staying present for your child, you do not need to make room for fears.
It's not easy, but it is possible to do this in the ICU. We found that the following were helpful for us to overcoming fear:
Share your fears with family, friends, nurses, whomever. Fear is most powerful when you are alone with it. A burden shared is a burden lessened.
Remember that fear is imaginary. Your fears will seem real, but they are not. They are glimpses of possibilities. Hope is the same, a glimpse at a possibility.
Replace fear with Love. Every time you feel afraid, think of the love you have for your child, the love they have for you, the love your family feels for each other.
Be active in caring for your child. We found that when we had something to do, it helped us focus on what was really going on, and we were better able to keep fear at bay.
Pray. No matter your sense of faith, prayer is the humble request for help with an extremely tough situation. Ask for help dealing with your fears. In doing so, it is very unlikely your fears will grow, and much more likely that they will lessen. One possible prayer for you to use at this time might be the Two Breath Prayer, which we found this summer:
When you get frustrated, or antsy, or whenever seems life akimbo, try the two breath prayer. it starts on the inhale; you give yourself the full undivided promise of two breaths dedicated to you and your prayer. you can do it anywhere. breathe in and as you do, close your eyes if you can and start your prayer. it's just one thing --a prayer for thanksgiving, a prayer for strength, a prayer for healing, a prayer for a loved one. pick one. send out that prayer on the inhale, and as you exhale, watch it come to life and move into the world. breathe in again and send your loving energy along behind the prayer to carry it safely along, exhale and be still in your mind. open your eyes.
Remind yourself to be present. As hard as it is, staying attentive to what is really going on in our ICU room is more powerful than the fears that try to build in your life.
Make up your own ways to overcome fear. It can be done, and you will find your own ways to deal with fear.
Overcoming fear, replacing fear with your Love for your child, is not easy. In fact, it's very hard to do. But it can be done, and the greatest blessing you'll find in this is that you will be better able to serve and care for your child and your family while surviving this trauma.

Other Considerations
Some of the “other items” we had to consider were:
getting pets looked after
getting bills paid
getting plants watered
getting the fridge cleaned out
changing any open travel plans
dealing with expected deliveries
Dorenbecher Specific Information
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Glossary
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Child-Life Specialist
Infection
IV
Neurosurgeon
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