What Should I Expect During a Hospitalization?

Periodically your child may have to be admitted to the hospital for what is called a routine “tune-up.” This decision is based on the physician’s evaluation of your child’s stability including changes in a chest x-ray, changes in sputum, level of activity, weight and appetite, or respiratory findings such as a decrease in pulmonary function, increased breathing rate or pattern, or low oxygen levels. The actual hospitalization can last from a few days up to three weeks.

Where Will I Stay?

Most patients with CF stay on Adolescent or General Medicine ward on the 4th floor of the hospital. You may be in a private or semi-private room depending on how full the hospital is. You will not be placed in a room with another patient with cystic fibrosis per infection control guidelines. These guidelines are implemented to prevent potential exposure to other patients with resistant organisms in their secretions. Patients with CF are to stay at least 3 feet from each other and are not allowed in each other’s rooms or in any areas of the hospital where there are other CF patients. Thorough hand hygiene when leaving and entering your room is essential. You will be provided with a special hand rub to use during your hospitalization called Calstat. You will need to take a bottle of Calstat with you whenever you leave your room. A parent or guardian is allowed to stay with you during your hospitalization. For all other visitors, visiting hours are between 9:00 a.m. and 9:00 p.m. Siblings will be able to visit during these hours but will not be able to spend the night.

You are allowed to bring things from home that will make your stay more enjoyable such as a favorite blanket, mp3 player, movies, but please do not bring things of value to the hospital as you will be out of your room at times and we cannot be responsible for lost items.

People You Will See

A person from the admission office will collect information from you. Once in a room, either a nurse or patient care technician will take your vitals signs (heart rate, respiratory rate, weight, height, and blood pressure). A physician will see you and ask about current medications, how you are feeling, and physically examine you. Your nurse will also ask you some questions and examine you. Your nurse may draw some blood and start an IV. A respiratory therapist will perform treatments 4 times a day. A child life specialist will visit with you and plan a daily schedule during your hospitalization. They also provide fun age appropriate activities during your admission. A social worker will speak with you and assist with emotional support during your stay. The nutritionist will meet with you and discuss your dietary needs while in the hospital and make sure you are getting enough calories to get well. Your weight will be monitored and adjustments made to your diet or enzyme replacement therapy to help meet any weight gain goals. 2-3 weeks is a long time to miss school so it is important to keep up with schoolwork. We can arrange for work to be sent in or brought to you. We also have teachers on staff to help student’s keep up. Arkansas Children’s Hospital is a teaching institution meaning a resident or intern may also examine you and be involved in your care. Remember these interns and residents are the future physicians of our communities and it is important they gain knowledge and awareness of CF.

Procedures and Tests

The main reason for admission is for a high dose of antibiotics. These high doses cannot be given by mouth. The most effective way is directly into the bloodstream. An IV will be started permitting administration of medication. It usually takes 30 –60 minutes to run antibiotics in the IV. Once finished, the line will be flushed and capped allowing freedom to move about until next treatment, which is usually anywhere between every 6-12 hours depending on the medication. Blood levels will be drawn at certain times to make sure the proper of level of antibiotics is being administered. Not all blood work can be drawn from an IV, so be prepared for a few needle sticks. IV’s only last for a limited time period and eventually go bad and need to be replaced. For this reason you will usually be scheduled for a PICC line placement. This is a long line that usually lasts your whole admission. A chest port or an arm port may also be discussed. They are usually preferred for patients who need frequent admissions or IV access for a prolonged period of time as they are more convenient. Your doctor can help plan which system is right for you. Other tests performed might include chest x-rays, pulmonary function tests, hearing tests, bone densitometry, and other blood work. If you are not sure what a test is for or why being done, always ask.

What Can I Do While I’m Here?

New infection control standards require you to stay in your room to prevent contact with bad germs that can harm your lungs.  However, a child life specialist can help keep you in age – related activities while you are here including computers and video games which can be brought to your room, a variety of arts and crafts, and other different activities.  Physical Therapy may also take you out on the roof once you are feeling better for some outside air or maybe to shoot some hoops.   While we hope these activities make your hospital stay more enjoyable, it is important to remember the most important thing and our goal – is to make you better. A schedule will be implemented to help keep your day on track of all the important medical treatments that must be done and still allow some free time. This will include getting up early for your first respiratory treatment around 7:00 am and being in bed by 10:00 pm.

Nurses help check you in, routinely check your vital signs, administer medications, assist with IV therapy, help communicate your needs to appropriate staff, and in general help make your stay successful and comfortable. Nurses will be able to answer many of your questions regarding treatment, schedules, etc.

Respiratory Therapy will be a big part of a hospital stay including aerosol medication and chest physical therapy 3-4 times daily. Sometimes patients get cranky when wakened for morning treatments, but remember these treatments are a big reason for hospitalization and the people giving the treatment are trying to help you get better.

Nutrition is also an important part of in-hospital treatment and will help with menu selection, recommendations about high-calorie supplements, plan special diets if needed, and adjust enzymes. They will also assist in arranging continued supplements at discharge through medical equipment companies.

Child-Life Workers are here to help make hospitalization a more positive experience finding the right kind of entertainment for a child and helping the child understand things that he encounters in the hospital.

Social Workers are available to help with a variety of issues from family adjustments, day-to-day worries of CF care from insurance, additional expenses, deterioration of health concerns, disruption of hospitalization in family life, siblings, transportation issues, or just to be a sounding board.