Who’s Who? Am I in the right place?
By the time the patient is hospitalized, there is usually an acceleration of symptoms and complications. These can be neurological problems, worsening gastrointestinal condition, kidney malfunction.
At this point one or several medical specialists will be brought in to consult. They may include:
Ideally if the patient is a child, pediatric sub-specialists will be brought in to evaluate the patient and confirm a diagnosis and treatment plan. (pediatric gastroenterologist, pediatric nephrologist, pediatric neurologist, pediatric surgeon, etc.).
If there is any suspicion of Hemolytic Uremic Syndrome (HUS) or any other foodborne illness that requires critical care, you are at a critical junction. The question becomes “Am I in the right place?”
Specifically you should ask if the hospital you are in has an Intensive Care Unit (ICU) if the patient is an adult. If the patient is a child, you should ask if the hospital has a Pediatric Intensive Care Unit (PICU). If not, ask the specialist(s) to make preparations for a transfer to a facility that can provide critical care.
Usually, the first specialist to suspect a severe illness will arrange for this transfer, but sometimes patients will have to ask that this be done in a more urgent manner. If there is delay, reach out to your pediatrician, family doctor, or personal contacts you may have in the medical field to intervene.
Patients have the right to be transferred to another hospital. The process of being accepted and admitted to another facility will be much smoother if your doctor(s) make the arrangements for you.
Transfer will be done by ambulance if distance allows, or by helicopter if needed.
It was 2:00 in the afternoon. I distinctly remember the time because my husband was at work, and my 6-year-old was in school and I said to myself, “I’ll just pop over to the ER real quick and be back home before anyone notices.”
An hour after I arrived, things were going according to plan. The ER doctor told me I would receive some fluids and be sent home. Then, at 4:30, that same doctor, along with a new doctor, arrived in my room with a whole battery of questions that seemed to be coming out of nowhere. I was trying to make sense of what they asked as I answered:
+ “No, kidney disease doesn’t run in my family.”
+ “I have definitely not been out of the country.”
+ “No … I don’t think there is any history of blood disorders in my family either.”
The clock ticked on and for minutes at a time, doctors and nurses would pop in and out of my room, and ask questions while scratching their heads or looking like they were contemplating a riddle. It was odd, but I wasn’t panicking. In my mind, there was still no cause for concern.
At approximately 5:30, the hospital’s kidney doctor came into my room. Something about her immediately indicated a significant change. Something wasn’t right.
“Ms. Barnes,” she said, “you should call your husband now.” “Tell him to meet you in Columbia” (a nearby city with a bigger hospital) “because you are being taken by ambulance to the University Hospital’s ICU.” “Tell him your kidneys are failing, and we don’t feel we can help you here.”
How on earth can I keep up with all this?
By the time you have entered the medical system, certainly if you or your loved one is hospitalized, things may start happening very fast. It will be hard for you to keep up with developments if you do not start some method of taking notes. One study found that 40-80% of medical information provided by healthcare professionals is forgotten almost immediately. For you to be a constructive member on the team of people caring for your loved one, you have to stay informed by accurately understanding the medical situation.
Some people dictate daily notes onto their smart phones, some start a journal, some write on the back of lab reports that are frequently printed out. Whichever method you use, there will also be quiet moments for you, your partner or friend to record any information or thoughts you consider important.
These will include:
Note taking will help you reorient yourself when you become tired, distracted, or feeling overwhelmed. It will simplify the growing challenge of keeping other family members informed. Later, looking back, it’s something you’ll be grateful that you did, and can even become a cathartic experience.
“It worked best for us to take notes in a spiral notebook that we kept in the room. We tried to keep the important information in one place as best we could.
It would have been helpful if we had snapped a photo of the dry erase board in the room at each shift. It listed the assigned doctors, nurses, aides and the schedule for the day. A picture of those boards would have been useful when I was having trouble remembering a name.
It also would have been nice to have recordings of the daily rounds. Sometimes it was hard to catch everything.”
You may also be inclined to keep up with the frequent lab results and findings of various tests that may be ordered, if only to keep abreast of the changing medical picture.
If not, rest assured that the patient’s entire medical record is accumulating and being preserved by the Medical Records department of the hospital.
By law, patients have access to their Personal Health Record, as do parents if the patient is a dependent minor. Upon discharge the medical record should be made available, and you should not leave the hospital without it.
It will include the lab work, test findings, surgical reports, imaging results, etc. The most important use of your complete medical record is that it can play a role in any follow-up care the patient may need in the future.
“My husband snatched up every lab result and folded it into four sections like a little book. This gave us four blank ‘pages’ to write our questions and notes upon, integrated into the lab report itself.
We kept all those little pamphlets; and they formed a pretty complete record of all the ups and downs, enough information to write a book.”
There are times in your life when you need help. This is one of them.
At some stage early on in a severe foodborne illness, you will realize that you need help. You may be dealing with medical complications that appear so quickly and you must accommodate very rapidly to a very stressful, unforeseen new reality.
It’s good to take stock of who can count on. If you have a spouse or a partner, they will be indispensable in handling the challenges that may lie ahead.
If you don’t have a partner to lean on, don’t go it alone. Identify that person who you can most rely on to be a steadying form of support for you. Bring them in physically, early on.
If you have other dependents at home, line up continuous childcare. Have a family member or friend move in to care for them. Or allow close friends to take children into their homes if you are facing a hospitalization of indefinite length of time. Start thinking about this and make preparations early on.
Do not underestimate how much people in your sphere will want to help your family.
If you have a family member, relative, or friend in the medical world, connect with them and let them know that you will depend on their expertise to help you interpret issues you don’t understand. They can be a tremendous resource of information and advice to you.
If the patient is a school-aged child, let the school know about your child’s absence and illness. This way the teacher can start a file of missed schoolwork and engage your child’s classmates to send supportive messages, cards, artwork.
Your hospital will have a social worker on staff. Ask to meet with them to inquire about support to help you manage. Most hospitals allow parents of critically ill patients to sleep in an on-site space designated for this purpose, or at a nearby location if they are affiliated with organizations such as Ronald McDonald House Charities Foundation.
“Because we were hospitalized far from home, I’d occasionally have to leave our son and my wife alone in the PICU to fly back and forth to our other children and my work a few days per week.
My sister in law, a retired nurse flew in to take my place for a few days. That was so helpful for my wife to have the support of her big sister, and helpful also to our son who was just recovering to the point that he could sit up again.
His aunt lifted his spirits, became a new and fresher advocate, and even found a way to roll him in a wheelchair, IV poles attached into the hospital courtyard to be out side for the first time in several weeks.”
Also, Child Life Specialists are available to help families of hospitalized children. They can provide resources, advice, emotional support throughout a hospitalization. As your child recovers they will become increasingly engaged in coordinating rehabilitation, psychological care, social activities, entertainment, etc.
Understand that you now will focus all your energy and time on your loved one. This means that it is improbable for you to continue working, attending school, or continuing your normal routine.
An immediate action you can take to preserve your resources is to clearly outline your policy for hospital visitors, and how to share updates with your circle of family and friends. You can manage these communication demands in ways that conserve your time and attention.
Consider platforms like email chains, or a CaringBridge account on social media so that you can communicate efficiently with family and friends while limiting the number of independent calls and messages requesting updates.
Everyone around you means well, and is naturally impacted by what your loved one is going through. You also need their support, but find ways to get that support on your own terms so that you can focus on the patient.
“We were cautious about how much information we put on social media. I thought carefully how my private teenaged daughter might feel about it when she recovered.
I also considered that her siblings didn’t want to hear every detail of her illness, and I thought we’d be better off not putting it all 'out there’.
It was helpful to have one place to share information though, and the words of encouragement left by family and friends were comforting in a way I did not anticipate. Even now it’s moving to go back and look at how people reached out to us.”
This is where your loved one can get
the critical care they now need.
When a patient requires critical care they will be moved to an Intensive Care Unit (ICU) if they are an adult. Children will be in a Pediatric Intensive Care Unit (PICU).
Intensive care medicine is a medical specialty that deals with critically ill patients. A physician in this specialty is called an Intensivist, and they will act as the team leader of the unit.
Patient care that had previously been managed by your family doctor or pediatrician, will be turned over to the Intensivist at this point. Some ICUs may refer to this doctor as the “critical care” or “attending” physician.
Intensive care units are also staffed by multidisciplinary teams composed of many different health professionals. Doctors with specialty training in various organ systems, critical care nurses, physical therapists, respiratory therapists, laboratory specialists, and pharmacists are all part of this team.
The unit allows the patient to be constantly monitored for vital information such as their heart rate, blood pressure, breathing rate, body temperature, level of oxygen in the blood.
You will soon get very familiar with these numbers on the monitor, which also are displayed on a monitor at the Intensivist’s central desk.
Other diagnostic technologies can be brought to the patient’s bedside such as imaging equipment, echocardiogram, electrocardiograph, and ultrasound.
The patient will have intravenous (IV) lines to provide fluids, medication, and nutrition. Feeding tubes may be placed through the nose, or through a peripherally inserted central catheter (or PICC) line which delivers most of the body’s nutritional needs into Superior Vena Cava, bypassing the gastrointestinal tract.
Drains and catheters may be used to remove fluid and urine.
Life supporting technologies like ventilators, IV and feeding pumps, and dialysis equipment can be set up bedside.
All of this can be extremely intimidating.
Because there is no real preparation for how to react in this setting, you’ll probably feel like you’ve landed in an alien place. Also, by now you are exhausted by the worries, uncertainties, and frustrations you’ve endured to get here. Hopefully, now that your loved one is being constantly monitored, you will feel some relief knowing they’ll receive immediate intervention if the illness worsens.
Nurses will rotate on their shifts, and at many hospitals you will find that on average there is a continuity of the same nurses assigned to the patient over a period of time. They can be an extremely important source of comfort and information as their interaction with the patient is so focused and enduring.
Nurses will answer your questions and concerns or convey them to the Intensivist.
The Intensivist on duty will direct all the care. He will order the frequent lab work, other tests, and call in the various sub-specialists who will evaluate the patient from the perspective of their particular organ system. Together they will confer and act as a team.
You will have opportunities to meet with the group of specialists individually and collectively, and you will interact frequently with the intensivist.
“We had to deal with being in isolation, limiting visitors, suiting up with PPE every time we entered the cubicle, and were restricted from going anywhere else in the hospital for a time.
And that was before Covid-19, which has greatly impacted how ICU’s are run during the pandemic.”
Every intensive care unit not only has its own hierarchy, but its own rules and protocols — which may differ from one hospital to the next. Here are some general rules you can expect:
*Please note: There are often restrictions on bringing flowers or food into the unit.
“I was so glad that the head nurse in the PICU laid down the strict policy regarding visitors and even fielded all the calls into the unit from friends and family back home asking about our child’s status.
Without her protecting us from a daily swell of people trying to express their concern, we would have been even more exhausted and overwhelmed.”
HUS is a serious illness.
Most patients recover fully, but some cases are complicated.
Between 5-15 % of individuals infected with Shiga Toxin producing E.Coli (STEC) go on to develop hemolytic uremic syndrome (HUS).
HUS is a blood disorder in which many small blood clots (thrombi) form suddenly throughout the body. Hemolytic means that red blood cells break down, and uremic means that kidney injury causes urea (a waste product) to accumulate in the blood.
The minute blood clots block small blood vessels throughout the body, particularly those in the brain, heart, and kidneys. These minute clots damage organs by depriving them of oxygen, and their fibrin strands shred red blood cells as they pass through partially blocked vessels.
The formation of these clots also mean that an abnormally high number of platelets are being used up, which leads to a sharp decrease in the number of platelets in the bloodstream.
HUS is very closely related to another blood disorder called TTP, which stands for thrombotic thrombocytopenic purpura. TTP is more common among adults.
Although there is no specific test to diagnose HUS, doctors conduct a number of tests to make a diagnosis. Various tests are used to show the count of platelets and red blood cells, and to reveal kidney function. Diagnosis is made when these three clinical features converge:
“The first nine days of my son’s hospitalization had been horrendous! His body slowly filled with fluids due to his kidneys not functioning. On day eight they placed chest tubes and day nine he was struggling to breath.
He had nothing left in him to fight this battle. A group doctors came in the room to tell us he had congestive heart failure and they would be placing him on a ventilator. The room started spinning and everything seemed to move in slow motion.
It was too much information. My mind could not process it.
I thought my son was going to die. I started having visions of him in a casket. My husband and I had to leave the room. They let us back in a few hours later. To our surprise, he was resting peacefully. His vitals all looked normal. He was in a medically induced coma, but it really looked like he was sleeping, something he had not done for almost nine days.
Instead of despair, we felt relieved. He was no longer suffering. He remained on the ventilator for five days. I felt emotionally numb, but thankful he was still alive.”
Symptoms of HUS can include:
Most patients recover well with supportive therapy and go on to regain full kidney function. However, some HUS patients develop complications that are related to where in the body clots may form, causing infarcts to specific organs.
“Hope and Horror. That’s what I felt as I watched the repeated plasma exchanges used to treat my 11 year old.
Four bags of precious human plasma lined up on the foot of the bed. How many donors went into each one? Transparent lines a little larger than a drinking straw attaching him to the machine.
Hope: Look at how the fresh frozen plasma goes into him, a rosy syrup unpacked from the blood bank’s styrofoam cooler. While it cycles his entire blood supply the plasmapheresis machinery reminds me of the sound of our ice cream maker makes ... churning away while we wait in anticipation.
Horror: The cloudy, angry purulent slush draining into the exit lines. Evil exposed, the toxins that set this nightmare in motion and the shredded blood cells that have gone on to damage organ after organ siphoned off in this thick orange sludge.”
Complications may include:
Traditionally it was thought that no known treatment could stop the progress of the syndrome once it has started. That approach uses only supportive care of key body functions, aimed at preventing further complications.
Supportive care may include:
“We were encouraged when our daughter’s nephrologist told us that most HUS patients’ kidneys ‘wake up’ as they pass through the acute phase of the disease.
It was hard to imagine that could be possible after suffering such a horrible injury, but the human body can be pretty amazing.”
Complicated HUS involves damage to other organs beyond the kidneys, such as the brain, heart, or pancreas. Because complicated HUS is so unpredictable, other treatments must be implemented as complications emerge.
These reactive treatments may include:
In cases where life threatening complications arise, it often comes
down to “What do we have to lose?”
There are currently two experimental treatments that are aimed at interrupting the underlying process of HUS. For those patients whose disease become complicated and involve other organ systems beyond the kidneys, parents and patient advocates should know that they can ask for their doctors to consider these treatments.
Rather than wait for further damage to occur, it may be wise to have these discussions early in the course of your loved one’s disease. It is important to communicate to the team leader, the Intensivist, emphasizing that you need and appreciate the clinical judgement of the doctors involved, that you understand these treatments are not for every patient, but that you want the team to weigh the risks and benefits for your family member. In cases where life threatening complications arise, it often comes down to appealing “What do we have to lose?”
If you encounter resistance, ask your intensivist and sub-specialists to access their “Up To Date” medical portal (www.uptodate.com) for the latest literature on the treatment of HUS.
There are differences of thought in various medical centers, and some physicians may not be aware of current recommendations on therapies which are rapidly evolving at centers that manage numerous HUS cases. However, with the links below and your communication skills, you should be able to point out the accumulating evidence of the efficacy of these two treatments when making your appeal: Plasmapheresis and Soliris (Eculizumab).
“I know Soliris doesn’t help every HUS patient, but for my daughter, I really believe it helped her turn the corner.
She was getting sicker and sicker in the ICU, and we were so afraid we would lose her.
It wasn’t immediate, but she improved dramatically in the week after she received the Soliris.”
Plasmapheresis, or plasma exchange, is a proactive therapy aimed at stopping HUS on the level of its basic mechanism: damage to organs caused by the underlying disorder within the blood. It has shown to be an important therapy, especially in typical HUS patients (those cases with bloody diarrhea) who develop central nervous system involvement.
Plasma exchange removes potentially toxic substances from the circulation, and some hematologists believe it may provide the patients with a missing blood factor which made him or her more vulnerable to HUS.
Plasma exchange is the first treatment of choice in the closely related disease, TTP (Thrombotic Thrombocytopenic Purpura). Without plasma exchange, 90% of TTP patients die.
There is a great overlap between HUS and TTP. Both are thrombotic microangiopathies, both are categorized by injury to endothelial cells which line small blood vessels, both involve small clots of platelet-fibrin. Both illnesses can occur as sporadic cases, or in epidemic outbreaks, or in familial/genetic pattern.
The distinction between the two syndromes of HUS and TTP is increasingly viewed as controversial and arbitrary. Complicated HUS patients, (ones who suffer damage to other organs besides the kidneys) are often described as “HUS/TTP” cases.
Soliris, or generic name, Eculizumab is a monoclonal antibody. If used very early in children with typical HUS who develop neurological complications – as 20-50% of HUS patients do –Soliris may reduce serious long-term neurological disabilities. It is also considered in cases with other severe organ involvement such as cardiac dysfunction.
The monoclonal antibodies of Soliris are lab-produced proteins and have been helpful in fighting a wide variety of diseases, including cancer. Although it has been used to treat severe cases of Shiga toxin E. coli related HUS (STEC-HUS), it has not yet been approved by the US Food and Drug Administration (FDA) for this purpose.
There is no single definitive cure for Hemolytic Uremic Syndrome (HUS). Rather, its treatment involves managing and monitoring its symptoms while the body recovers. The medicines and procedures involved in this treatment can be quite extensive, as multiple organ systems may be involved.
Shiga toxin E. coli related HUS (STEC-HUS), sometimes called typical HUS, is caused by the Shiga toxin that is most commonly found in E. coli bacteria. Atypical HUS (aHUS) is a related disorder, and generally has a genetic component in origin and may become a chronic condition.
Soliris is a drug that has been approved by the FDA to treat aHUS. Some doctors believe Soliris can help STEC-HUS patients and use it “off-label” for severe cases of STEC-HUS, particularly if the patient’s central nervous system has been impacted.
Hospitals may be reluctant to approve the use of Soliris in STEC-HUS patients for several reasons: its efficacy has not yet been proven in a large multi center trial; there are side effects including the possibility that patients may be more likely to acquire a meningococcal infection; and the drug is very expensive and may not be covered by insurance.
The nature of complicated STEC-HUS makes it challenging to conduct a large-scale clinical trial of Soliris to prove its efficacy. STEC-HUS is relatively rare, and unfortunately, it is not uncommon for there to be a delay in its diagnosis. Cases are sporadic, acute, and spread out across the country and world. These circumstances make it challenging to recruit patients for a large, well-designed clinical trial.
There is some evidence that early use of Soliris is beneficial, and there have been some relatively small studies of the use of Soliris in STEC-HUS patients, but more research is needed. Soliris prescribing information includes the warning, “Life-threatening and fatal meningococcal infections have occurred in patients treated with Soliris. Meningococcal infection may become rapidly life-threatening or fatal if not recognized and treated early.”
Meningococcal vaccines are typically given in the pre-teen and teen years, so children may enter the hospital without having been vaccinated. A vaccine can be given in the hospital prior to administering Soliris, but its effectiveness will be limited since there will likely not be enough time for the body to develop immunity. This very serious potential side effect requires that the use of Soliris in a STEC-HUS patient be carefully considered.
Finally, Soliris is a very expensive drug. Insurance companies can be reluctant to cover the cost of the drug given the lack of FDA approval for its use in STEC-HUS cases, the need for additional research, and the risks involved. For critically ill patients, some hospitals may be willing to cover the cost of the drug.
A signed consent form will be required from the patient or parent acknowledging the experimental nature of the treatment and the risks involved.
"All of the tests came back negative and on August 28, after nearly a month, I was finally discharged. They believed it was E. coli that caused the HUS.
I was released to outpatient dialysis twice a week, while still taking antibiotics and high blood pressure meds. I had to check my blood pressure daily and keep track of my urine output. I was also started on a drug called Soliris every other week to assist my kidneys.
At this point, I had blurry vision and could barely drive, and it was discovered that the blood vessels behind my eyes had started leaking. My life went on like this for almost another month. I returned to work the same week of my discharge. Luckily, I had great co-workers who showed their support by driving me to and from work.
On September 25, after nearly two weeks of not eating (due to the effects of the antibiotics), I celebrated by having pizza for my first meal. By the end of September, I was able to end dialysis and be off of all of my medications."
There are potential treatments on the horizon. Recent progress has recently been made by Australian microbiologists who have discovered the pathway for the production of Shiga toxins in STEC infections. This research may lead to potential target drugs that can suppress Shiga toxins during early stages of E.coli infection.
There are many tests that will be frequently done in intensive care. These yield volumes of information doctors need to make decisions.
Laboratory studies are used to diagnose and to track the patient’s condition. Testing will include a long list of components. Your doctors and nurses can help you to understand their meaning and impact on the patient’s changing condition. This may seem like an incomprehensible alphabet soup of new terms and measurements.
However, if you are interested in the language of this intimidating terrain, it may help you to understand some of the bearings that the doctors are tracking in order to lead the patient back to health.
“There is so much large and small information coming at us every hour to show the rapidly changing condition of our child. Big things like portable machines rumbling in and out to make x-ray films of an enlarging heart silhouette, lungs fogging up.
Ever present little things like inch tall vital signs blinking over his head. Small vials of blood are sent downstairs to the lab which sends back reams of values measured on the most minute scale. Microliter, deciliter, milligram, million cells per microliter…
Tiny numerical clues of what’s happing now, and what can happen next on the grand scale of things.”
Blood laboratory testing (commonly called “labs”) will track the following:
Urine is analyzed for abnormal levels of protein and infection:
Beyond these frequent blood and urine laboratory studies, doctors may want to evaluate the patient and guide treatment plans for any complications that might arise.
To do this, they would order Imaging Studies:
There are ways you can get through such a long and exhausting experience.
When your loved one has a severe foodborne illness that develops into more serious complications, it can demand great resources on your part, often more than you feel you can possibly pull together.
Many parents and family members liken their experiences to a roller coaster ride because of the dizzying twists, tedious climbs, precipitous falls.
Some describe it as running a marathon because of the prolonged and grueling effort. Whichever analogy you experience, you’ll probably agree that HUS or any severe foodborne disease is:
So, how can you get through it, acting as the patient’s best advocate? Know these four characteristics going in, and know that you are not the first to work your way out of this terrifying place that your loved one has landed in.
It’s a prolonged journey. That means you’re going to have to pace yourself, use your resources wisely. Below is a list of suggested strategies that can help.
It’s an unpredictable landscape. Being informed, engaged with the experts who are reading the signs and plotting the course will be a big help as you try to keep up with your current position. Not counting on a direct and easy path is also something you can do emotionally to steel yourself for what lies ahead.
It’s a threatening place. Help the patient by being ever vigilant. Watch everything. Ask questions, bring details to the attention of the busy medical team. You know the patient better than anyone else. Trust your instincts and keep a laser sharp focus on the patient.
It’s a demanding place for all concerned. It’s demanding of the medical care givers, which you can think of as pathfinders. They are professionals with the expertise and judgement to lead the way. They are however imperfect, and the biggest threat to them working as a team is when one of them gets territorial.
For example, a child with a more severe case of HUS may have a cardiologist (heart), gastroenterologist (stomach, intestines, pancreas, gallbladder), nephrologist (kidneys), and neurologist (brain). Each only specializes in their “body part” and at times this can feel frustrating because the entire body is affected. Sometimes their ideas for best treatment are in conflict. Know that this can happen in the hyper-specialized world of modern medicine. Appeal to the Intensivist not to let that happen. In complicated disease involving multiple organ systems, they all have to work in a unified direction.
Having a severely ill child or other family member is extremely demanding on you and your family members. Look after yourself, and be mindful of your other dependents even if you cannot be with them now.
Demands are the highest on the patient as he or she struggles to stay alive and recover. Your role is to keep your child or loved one afloat emotionally and spiritually. No one else can do that.
“I didn’t know how aware my daughter was of what was happening when she was in the ICU, especially when she was unconscious, but we spoke to her like she was her old self.
We tried our best to be encouraging at her bedside. I asked one of the doctors if there was anything that would be beneficial for her brain function. He told us to treat her as if she were home with a bad flu, offering comfort and allowing time for rest.
That made good sense to us and helped me relax a bit and trust that her body was doing the work of healing.”
“Sometimes all I could do was to clear a space on his mattress between all the tubes and lines, nestle beside him, and stroke his head.
I knew he could sense that I was with him.”
Parents, family members and survivors share their strategies
for finding refuge and retreat in the midst of the maelstrom:
Have your partner, a best friend, close family member be with you to support you and to rotate staying beside the patient.
Make a pact between the two of you that one will always keep optimistic if the other starts to lose faith.
Take turns sleeping in shifts so that neither of you becomes overly exhausted at the same time.
You may be overwhelmed with anxiety, finding it difficult to sleep. It is very difficult to turn your brain off the day's worries, especially if it was a challenging medical day.
Some find it necessary to get a prescription for sleeping pills or anti-anxiety medication.
You are living an ongoing traumatic experience and there is no shame in seeking help. (see above)
You will not be an effective advocate for your loved one if you do not get sleep.
The need for good sleep lays a strong foundation for your continued emotional and physical health for the long haul of this illness.
Touch, stroke, hold hands with, gently talk to, help bathe the patient. Let them feel and hear your presence, even when it seems they are far away.
Tell the patient long stories of things you did together in happier times.
Focus on these wonderful parts of their past so you can channel positive energy to them.
Read to them notes and cards from their classmates, friends, siblings.
Post artwork and cards on wall space within their sightline, clearing this with the nursing staff so that these do not obstruct access to any of the instruments or machinery.
Offer to read books to the patient or let them listen to relaxing music. Do not be surprised or disappointed if they are uninterested or find these irritating.
Television will most likely also be especially overwhelming and annoying to them as they need peace and rest more than outside stimulation.
Eliminate as many distractions as possible (undesired visitors, responsibilities of day to day care for other children, constant demands of keeping everyone in your circle informed).
Eat as wisely as you can in the hospital cafeteria. There are usually some healthy options to keep you properly nourished.
While other families in intensive care may overlap with you, and you can share supporting words with one another, try to be careful that you do not become overly involved in their tragic stories.
You have to shield yourself emotionally and save all your energies for your own battle.
Find a place in the hospital that is quiet and deserted at night to sit and reflect when you take breaks from the intensive care unit.
Many hospitals have a chapel of some sort. Go sit there quietly even if you do not pray. Think of it as a place to recharge your hope and deepest strength.
Get outside every day. Some hospitals have green spaces.
If not, find a safe route to walk in the day, through the parking lot or surrounding area. Your body needs movement to counteract all the sitting you are doing.
Some people find it helpful in such an alien place to create a new ritual to give some small bit of structure to their day and night.
This may be something as arbitrary as taking the elevator to each floor and walking in a circle through each public access area.
Do something that feeds your soul. Music, writing, handwork or ...
Keep a diary. People who’ve gone through what you are now enduring unilaterally agree that this is enormously beneficial in ways you may not even realize until years into the future.
Make sure your other children are with people who can look after their daily needs as you may not be able to see them for extended periods of time.
It will be very reassuring to you, them, and the patient to talk daily if possible.
As time goes on and the patient becomes more aware of his or her surroundings, be aware of the likelihood of developing a severe state of confusion, ICU Delirium or ICU Psychosis.
This condition is very common, occurring in 2 out of 3 patients hospitalized for any length of time in intensive care. Of those patients on a ventilator, 7 out of 10 suffer delirium.
People with delirium cannot think clearly, have trouble paying attention, have difficulty understanding what us going on around them, and may see or hear things that are not there.
These patients do not know that they are disoriented and away from a normal mental baseline. Their skewed sense of reality feels very real to them. Trying to reorient them to actual reality, to time and place is a good approach if this is done in a non-confrontational, calm way. Try to find something that you can both have in common with your perception. Ask your doctors and nurses to show you techniques they use when interacting with such patients to gently help them become reoriented, soothed, and reassured about their recovery.
Sleep is a key part of healing, and as your loved one improves, there are approaches that help them get periods of uninterrupted sleep in the invasive environment of the ICU.
Delirium usually clears up in a few days or a week. As your loved one continues recovering physically and mentally, be vigilant for Post Traumatic Stress Disorder (PTSD) and Depression, both of which can be triggered by exposure to a traumatic and disturbing experience.
“When my daughter was coping with ICU delirium, she went a very long time without sleep. I was hoping she could get some medicine that would help her sleep, but the doctors advised that the medicine could make the problem worse.
As a mom, it was hard keeping her awake during the day, when I knew she needed sleep so badly, but it was the only way to get her back on a schedule that would help her recover.”
“Once I finally got off the ventilator, but still weeks before I was able to eat again, I thought my pulse oximeter was a chocolate bar.
When I sucked on it it tasted like candy.”
“Subjected to constant pain, and the added indignities of enemas and other procedures, not being able to speak or move, I was trapped in my body. Emotions began to overwhelm me and depression predictably settled in.
The thought of death was becoming a welcomed relief. I clearly remember communicating to my husband that I could not go on. I remember him crying and begging me to promise that I would not give up but rather do my best to hang on. Once I promised him that I would try, my emotions were up and down and the feeling of being a prisoner in my own body proved overwhelming.
While losing track of time I became painfully aware of every second passing by. During the day I would often have a friend or family member read to me. During the evening hours when visitors would leave, I found those times of isolation extremely frightening.
My sons bought and set up a laser star projector in my ICU room. At night my ceiling would come alive with stars, constellations, shooting stars, and clouds. Bringing the beauty of the universe into my room helped get my mind off the machines keeping me alive in a fragile state.”
How you get along with the medical team
can have a large impact on the patient.
Many people are able to go through life without being in a prolonged, unpredictable, dangerous, and demanding medical situation. Most enter this intimidating world of critical care without any medical background. They have no preparation for the circumstances they find themselves in with a critically ill child or family member.
Don’t underestimate your own abilities, your unique relationship with the patient, or your role in becoming an essential member of the team working towards the best outcome for the patient.
To be a constructive team member, you may need to learn how the other members of the team interact, what their roles are, how their decision making and information sharing proceeds. You will learn about protocols, and what their expectations of you are.
You can be certain that everyone shares the best of intentions. Their first priority is to the patient. So on the most basic level you are intensely united with the medical team in the mutual mission to save your loved one.
Numerous studies support that when family members actively engage and communicate, there are better patient outcomes and a lower risk of medical errors. Don’t be afraid to be assertive if you feel something is wrong, or that maybe the doctors or nurses have missed some detail that you sense is important. Different doctors and nurses rotate on and off shift. You do not. You are your child’s or loved ones greatest advocate.
“Terry was the first nurse we met once we were transferred to the PICU. On the first day she helped me clean our son from the nearly constant bloody diarrhea. As he became more and more disoriented, Terry reassured us both that once he was taken down to surgery to implant a dialysis catheter in his abdomen, his condition would improve.
She was there for the entire first week, but when the weekend came and we knew she’d be off shift, my husband found her in the unit dressed in street clothes. She wiped a tear from her eyes and explained that she just needed to be sure our son had made it through the night.”
With such a chaotic, stressful situation, and with the inevitable ups and downs of critical illness, it’s hard to have, much less to maintain, a good attitude. But a good attitude toward the caregivers will be an important factor to maximizing positive interaction with the medical team.
Again, know that they are doing everything they can to support the patient. Treat everyone with respect. From the Intensivist, the attending physician, to each sub-specialist physician, every nurse, technician, therapist, cleaning person you come into contact with….each deserves your thankfulness and respect.
This is not to say that there will never be a conflict that arises. But when it does, you can assert your perspective in a strong, yet appropriate way that will more likely be considered.
A family member who is seen as helpfully available is more likely to be embraced as an important team member. Most intensive care units will allow your presence around the clock with a few exceptions.
There may be times you will be asked to leave, such as when another patient is having a medical emergency, if the doctors have to perform an invasive procedure on your loved one, or during shift changeovers.
Sometimes the staff may kindly suggest you go home or sleep in the hospital’s parent room if they feel you need rest. They understand that you cannot be effective if you are exhausted.
Find a point person to communicate with. Often times this will be a primary nurse, consistently assigned to your loved one, who can gather all the information and keep the family updated.
This makes it easier for the family and intensive care team to agree on one or several staff nurses to communicate primarily with the family. This helps the staff by more efficiently managing their time to focus on care for all the patients in the unit, and adds a personal touch for the family.
If an informational conduit does not develop on it’s own, feel free to ask the Intensivist, or attending physician, the unit’s head nurse, or your bedside nurse upon whom can you most frequently rely to keep you informed on the patient and the daily plan. Ideally, this point person will interpret the changing lab numbers, vital signs, and testing results, framing all the multiple bits of information into the context of the whole patient.
Be aware that nurses, intensivists, attending physicians, and sub-specialists rotate on and off their varying schedules. Therefore, you have to be flexible and prepared to have other informational point people when your primary team members are not in the ICU for a day or week at a time.
Try to be present when doctors conduct their rounds. Rounds are the times when doctors develop and communicate the daily plan for the patient’s care. Usually rounds are in the morning, but sometimes they may be in the early evening as well. Doctors may round individually or as a group of sub-specialists. Some hospitals have “family centered rounds” that allow family members to be present and involved. These practices differ from hospital to hospital and are in flux within each intensive care unit; but if you are present during doctors’ rounds you can learn much and perhaps participate.
Another very important way you can participate is to be another set of eyes on the patient. Remain vigilant on the details of care. You will soon become familiar with tasks, routine, the monitoring of vital signs, the functioning of infusion equipment, mechanical ventilation, the critical importance of sterile technique.
If something strikes you as odd, ask the nurse. Be especially watchful of sterile technique when IV’s, catheters, feeding tubes, surgical wound sites, etc. are being changed or adjusted.
Our dear friend and mentor who steered our boy’s care from afar reminded my husband everyday: “He’s gotten through all these life threatening complications and setbacks. Don’t lose him now on a stupid technicality like an infection.”
You’ve reached a great landmark when your loved one can leave intensive care.
When your medical team feels the patient no longer needs critical care, they will line up discharge from the PICU or ICU.
This is of course cause for great relief.
Yet many family members experience this as a stressful, vulnerable time. They worry that the patient will no longer be continuously monitored for vital signs or receive the immediate intervention if they take another bad turn. They are uneasy about a new nursing team, new routines, a lower nurse:patient ratio on the hospital in-patient ward. The patient still needs focused, ongoing care and families worry that new care givers will be less able to provide it.
Family members also worry about medical errors now more than ever. They fear a breakdown in communication about medications and the patient care plan during hand-off. They are concerned about possible delays and the timing of transfer, and they have a right to be. Data shows that transfers that occur during the night time or on weekends when staff is reduced are more likely to lead to readmission to intensive care.
All that being said, the patient will not be transferred out of intensive care until the doctors feel they are truly out of danger and ready to begin the recovery process.
In all likelihood you will not lose personal contact with your PICU/ICU team. The same sub-specialists will continue to check on the patient daily and direct their care through the Intensivist, even though they’ve been moved to an inpatient ward.
Before the transfer occurs, ask if the hospital has any printed material to help you to prepare for transfer. Some centers have printed material, and most hospitals will have patient care specialists to help answer your questions and may even be available to assisting the actual day of moving to the general ward.
Talk to the PICU nurse in the days leading up to the transfer about things that you should be attentive to during the transition. Is there a need for the caregiver to double-check medications during the transition, or at least review with new nurses on the ward?
Ask about what testing or procedures are planned in the coming days.
"I remained in intensive care for several more days and was even asked to talk with another patient who had just come in with HUS.
She got well faster than I did. Though she came into the hospital after I did, she left before me.
I was happy when I finally got to be moved to the main part of the ward I was in. I was in enteric isolation for another day and a half and then I got moved in with a roommate.
Even my roommate got to go home before me but she and I became friends in the short time we were together.
I was in Mayo for a total of 10 days when they decided that I was well enough to release me to go home."
During this time, the patient will become more aware of their surroundings and situation. Their memory and understanding of events may be impaired, especially if they were heavily sedated, spent time on a ventilator, in a coma, or had neurological symptoms.
Be gentle in relaying information about their condition to them, and follow their lead regarding how much they are ready to process. They may find it reassuring if a caring family member can matter-of-factly explain what happened, what machines are still assisting, and that they are getting good care. Don’t be surprised if you have to repeat these things over the coming days.
How best to handle sharing information will depend on the patient’s age, condition and preference. If their memory is foggy, what you say to them during this time could have a lasting impact on how they think about the event. While it may be hard, finding positive things to focus on can make a huge difference.
If you can share stories of loving friends and family that have reached out, caring and attentive hospital staff, and the patient’s resilience and strength, it may make the discomfort easier to bear.
If the patient has a faith that could offer comfort, there may be readings, prayers or practices that can be done bedside.
Consider expressing your own gratitude about the recovery, the people that have helped, and the patient’s bravery and good work.
Any complaints with hospital staff or issues around care may be best addressed out of earshot of the patient, especially if the patient is a child. You can ask that discussions with doctors take place in the hallway if your patient seems agitated by them.
“Once he was strong enough to walk, the child life specialist lined up interactions with other pre-teens on the ward.
Not only did this get him up and moving, strengthening his body by shuffling through the halls.
He was able to hang out in brief little visits with kids undergoing chemotherapy. This gave him a sense of purpose, supporting other kids fighting other battles.”
Once transfer is made and you get settled in on a pediatric or general ward, you and the patient may start to be aware of and actually enjoy a quieter, more private environment for those who have their own private room.
For others, you may now have to share a room with another patient and family and this comes with its own unique set of challenges.
Now that you’re out of the PICU or ICU, patient care shifts from crisis management to rebuilding health.
Medical workers like physical therapists, child life specialists, nutritionists, pulmonary therapists, will play a more pronounced role than they did in the intensive care unit.
Patient care specialists are available to help monitor patients’ physical and emotional well-being and report to medical staff.
Some may participate in rehabilitation and treatment program. They will focus on getting the patient physically and emotionally strong enough to leave the hospital. There will likely be opportunities through Child Life specialists to re-enter into social contact with other children on the ward (therapeutic play interactions for children, etc.)
Your patient may be able to receive more visitors now, though you may still want to limit them. Many hospitals have recreation, art and music activities available at this stage. In time, there may be opportunities to go on walks outside the unit, even outdoors.
If your patient is now allowed to wear their own clothes, it can help to feel more like themselves.
Just as open communication got you through the most critical stages of your loved one’s illness, staying informed and involved during this recovery stage will help the patient, you, and everyone around you.
Particular physical challenges during this time are fatigue and weakness, difficulty with resuming eating, being able to sleep. The average person loses about 2% of their muscle mass each day during intensive care. Many have to slowly learn how to sit up or walk again.
Because of severe gastrointestinal involvement during the critical stages, the patient may have gone days or many weeks without eating. It’s difficult to restart digestion, so feeding tubes and IV supplementation may need to be continued while on the ward.
Sleep cycles take a while to reestablish after all the medications, the insult of the multi-organ system disease, the harsh environment of intensive care. Despite all these challenges time on the ward can be a positive time for you and the patient.
Although there is still much hard work to be done, you’ll likely look back upon this phase as a bittersweet interlude.
You still can’t believe this happened. Your loved one has been grievously wounded. You’re still stuck in a hospital. But the patient is still getting support and care. Progress is being made. You are both alive. It’s a good time to let gratitude flow all over you.
Depending on the number and the degree of medical complications suffered, time in the in-patient ward can range from days to weeks or months. Your doctors and nurses will assess and keep you posted as the patient reaches key milestones along the way, getting ever closer to going home.
KEEP YOU AND YOUR FAMILY SAFE
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