The Hospital Stay
If you live far from the hospital, you may want to stay in a hotel or Airbnb for the day of surgery and a few days after. The hospital may have a list of nearby accommodations. The hotel can act as a “home-base” for family and friends who may need a break from the hospital, a place to call for updates (cell phones may not work well in the hospital), and a place for children to play.
If you are the parent of the patient, most hospitals will strongly encourage you to stay in the child’s room once he or she is on a regular floor. Immediately after surgery, while the child is in ICU, you may want to stay in a local Ronald McDonald House. These houses are very inexpensive or free and quite comfortable.
If the patient needs to change anti-seizure medications before the surgery to use an anti-seizure medication that is available in IV form, the patient may be admitted the day before surgery. If this is not an issue, and they do not require pre-admission, a patient may still have an MRI the day before surgery, so it will need to be nearby.
The hospital will require the patient to stop eating and drinking at a specific time before surgery. Taking nothing by mouth is very important; patients can vomit because of anesthesia, and this can happen while they are intubated. Vomiting creates a real problem if there is liquid or solid in the patient’s stomach. Also, before leaving home, don’t forget to have the patient remove ALL jewelry, including body piercings, to allow for safe MRI.
Day of Surgery
Most hospitals will have a separate waiting area for family and friends while the patient is in surgery. A family member should keep posted in this area at all times or leave a phone number with the receptionist. Usually, an OR nurse will call the waiting room with updates on how the surgery is progressing. After surgery, the surgeon may come to the waiting area to update the family on details of operation while the patient is moved to recovery. Keep in mind, if a surgeon says “…surgery should be approximately 4-5 hours…” this may not include at least 1-2 hours pre-operation anesthesia and preparation for surgery, and at least 1-2 hours post-operation for coming out of anesthesia. The hospital staff will inform you when and where you will be able to see the patient following post-operation procedures.
Intensive Care Unit (ICU) or NICU (Neuro-Intensive Care Unit)
If the patient is transferred to ICU or Neuro ICU following surgery, they will receive more one-on-one care than a regular floor can provide. Don’t be alarmed; this is the most common first stop following brain surgery. Patients in ICU will usually have lots of monitoring equipment attached to them. This equipment allows the nurses/doctors to monitor the patient at all times, including heart rate, respiration, temperature, medication dosage, etc. This monitoring equipment will have alarms that sound for many reasons, including sensors falling off, medication doses getting low, etc. Try not to panic as long as the patient seems fine; just let the nurse know what is going on. If it is urgent, the staff will ask you to leave the area—be respectful and follow this request. A staff member will find you in the waiting area and explain themselves once calm is restored.
There is a possibility the patient may be intubated (a machine is helping them breathe), and this means the patient will not be awake and able to talk to you. Even if they are not intubated, chances are good they will be sleeping a significant amount of the time for the first 12 hours after surgery. Sleeping is part of healing.
Take advantage of posted visitation times and be respectful of the ICU rules. Usually, in ICU, visitors are limited only to immediate family, and children may not be allowed regardless of relationship to the patient. Also, visitation may be permitted only for short intervals at a time. For children in pediatric ICU, parents may be allowed to stay all day aside from nursing shift changes but may be asked to leave at night. Some children’s hospitals have spartan sleep rooms for a parent whose child is in ICU.
When the patient is sent to a regular hospital floor, they may or may not have a private room. Hopefully, they will have little or no monitoring equipment attached to them so they may be able to get out of bed and walk around with supervision. Nurses will still be checking vital signs and administering medication (if needed) every few hours. If applicable, therapists may begin to start to work with the patient on rehabilitation, including physical, occupational, and speech therapy.
On the regular floors, visitors can usually stay with the patient as long as it is during visiting hours, and visitors can include anyone except maybe small children (due to the risk of infection). If the patient feels more comfortable with your staying with them overnight, you may ask your nurse if this is possible (rules typically limit this request to 1 adult only-NO KIDS). At this point, you may bring items from the home to make the patient and yourself more comfortable. The patient can also receive flowers and may be able to accept food, etc.
Certain medications may cause strange behavior or side-effects, including aggressive behavior, confusion, hallucinations, and extreme hot and cold flashes. It may be scary for family and friends, not knowing if the response is related to surgery or medications. Talk to the patient’s doctor if you are concerned about any strange behavior; hopefully, they can explain if this is a normal side-effect of the medicine.
If you notice hives, other rashes, swelling, or trouble breathing, tell a nurse or doctor immediately.
In some cases, the patient may be transferred from the hospital to an inpatient rehabilitation program or rehabilitation hospital. The patient will receive intensive therapy while remaining in a hospital setting. Nurses and doctors will attend to the patient’s medical needs, including checking vital signs and administering medications (if needed). The patient will probably have therapy sessions most of the day, so visiting may only be appropriate in the evenings. It may be hard for family and friends to participate in therapy at this time, but it is helpful to talk to the therapists about how you can help.
The Rehabilitation Hospital staff should help the family to prepare for the patient’s return home, including talking to you about any modification you may need to make at home (see Preparing Home Environment below). The staff can work with the patient’s health insurance provider to determine what items for the home are covered.
If the patient’s surgery is at a teaching hospital (like a University Hospital), there may be students coming into the patient’s room and looking over the charts. Trainees may feel obtrusive to family and friends, especially if the patient is in critical condition. Don’t be afraid to tell the nurse or doctor that this is bothering you.
Also, if anyone who is not designated “hospital staff” enters the patient’s room, do not be afraid to ask who they are and what they are doing and notify someone immediately. Advise a nurse or doctor if you or the patient are uncomfortable with a staff member’s care of your family member; do not hesitate if a preference of staff (e.g., male nurse vs. female nurse) makes a difference. Keep track of complaints: to whom, date, time, and specifics; we want the best for our loved ones, and so do the healthcare professionals.
You may have to act as an advocate for the patient, especially if they are highly medicated, intubated (a machine is helping them breathe), or just not able to speak up for themselves. Make sure you ask questions and speak up if something doesn’t seem right. You know the patient better than the nurses or doctors; let them know what you observe.
Also, due to patient privacy regulations, doctors and nurses may be limited to what they can tell you (even the patient’s spouse). If you know ahead of time that surgery is scheduled, it is crucial to have the patient visit an attorney to draw up a health care power of attorney. The power of attorney document empowers the primary caregiver can make medical decisions for the patient if the patient becomes unable to do this for themselves.
Preparing The Home Environment
Some of the most common symptoms following surgery may include fatigue, balance problems, vertigo, double vision, light, and noise sensitivities; however, each person’s recovery/symptoms are unique. Below are suggestions to make the home recovery environment as accommodating as possible, depending on the patient’s symptoms and their severity:
Try to keep stimulation to a minimum following surgery; this may include light, noise, and movement. Look for clues (frustration, irritability, fatigue) that the patient might be over-stimulated and adjust the environment accordingly (turn off TV/radio, dim lights/close blinds and keep disruptions to a minimum). The brain is recovering from trauma and needs rest from processing information. Once the patient seems ready, slowly add more stimulation. Also, remember everyone has good and bad days, so take your cues from the patient and adjust accordingly.
Family and friends will be worried about the patient and will want to visit. It takes a lot of energy to entertain, so, as the primary caregiver, consider if the patient is ready or not. Ask yourself, “will visitors be beneficial to the patient’s recovery at this time?” If not, decline visits. There are other ways family/friends can help (e.g., bring food, take care of children, run errands, etc.). If you do allow visitors, it may be a good idea to give them a time limit at first to monitor how the patient responds. Visitors can be beneficial to the recovery process when the patient is ready.
The patient may have a great deal of difficulty sleeping at night. Both the experience of hospitalization during which they are checked every few hours through the night, and the brain trauma itself can lead to disruption of the sleep-wake cycle. To help restore the sleep-wake cycle, keep the patient in natural light as much as possible. Natural light includes keeping the environment as dark as possible during evening hours. Evening darkness encourages the production of melatonin, the body’s natural sleep-regulating chemical.
The patient may have balance, vision, or motor skill problems following surgery, so standing, walking, and getting up and down might be a challenge. Also, the patient may be using some kind of assistance, such as a wheelchair, walker, or cane. Below are some physical modifications to your home you may need to consider:
a. If your home has more than one floor and the patient is not able to climb or go down stairs, you will need to adapt to single story living. For example, this may mean renting a small refrigerator for a bedroom or placing a bed in a living room.b. Move or remove furniture from necessary rooms that may make walking difficult. Eliminate trip-hazard furniture (foot stools, coffee tables, end tables, etc) to allow for more OPEN rooms.
c. Keep floors clear of small obstacles that patient could trip over including toys, small rugs, plants, etc.
d. Have hand-rails on stairs (both sides is preferable).
e. Add grab bars for the tub, shower and toilets. If this is not possible, a raised portable toilet chair can be used both for toileting and as a seat for bathing.
f. Make sure walk-ways are wide enough for a walker or wheelchair and purchase ramps (if necessary).
g. Purchase a foam wedge or use pillows to elevate the head of the bed if this is more comfortable for the patient.
Depending on the individual deficits, at discharge, a patient may be referred to different levels of treatment including, but not limited to, an inpatient therapy program (see Rehabilitation Hospital above), in-home therapy services, outpatient therapy services, or no therapy at all. Also, the patient may be referred to different types of treatment, including, but not limited to, physical, occupational, balance, speech, and psychotherapy.
A caregiver’s participation in therapy depends on your relationship with the patient. Do you think it would help if you gave the patient a little push to do exercises, walk, get out of bed, etc? Or will this cause fighting and tension between you and the patient? If pushing causes too much stress for you or the patient, it may be best to leave this to the therapist. Also, there are fun and therapeutic things you can do with the patient, for example, play cards, a board game, read/play with children, go for a walk, etc. Just make sure the task matches the patient’s level of recovery. Also, ask the patient’s therapist how they think you can best help with the therapy process.
Post-surgery may be a stressful time, not just for the patient but also for the caregivers, family, and friends of the patient. It is not easy to see a loved one in pain, left with deficits, or just not themselves. Try to be as patient and supportive as possible and also remember to take care of yourself so you can be physically and mentally able to take care of the patient (and family). Also, you may be taking on additional responsibility that the patient can’t do themselves, such as taking care of the house, kids, animals, bills, and the patient, too. This additional responsibility can all be overwhelming; whenever possible, ask for help.
Talking to others about what you are going through can help tremendously. Don’t forget to talk to family, friends, and your support system at Alliance to Cure Cavernous Malformation.