How to Set Up a Room for a Chronically Ill Patient on a Ventilator

When your loved one becomes ill or disabled, your life changes dramatically. Most likely, you'll spend long hours at the hospital or nursing home and sleepless nights at home, worrying about your loved one's safety and comfort. How much more so when it is your child that is critically ill!

My son Daniel was disabled all of his life, but three years ago, he took a turn for worse, when he was hospitalized with acute respiratory failure. He was intubated and placed on a ventilator and - ultimately - doctors performed a tracheostomy. My husband and I slept on the hospital floor for six weeks. During that time, we learned rudimentary basics of caring for a mechanically ventilated patient. Respiratory therapists were our life line. They took time to teach and explain and gave us the confidence we needed to bring our son home.

A social worker helped us find a home health agency and a vendor of home ventilation supplies and spent hours haggling with our insurance. Our next step was to get Daniel's room ready. We made due with what we had available and set it up to the best of our ability. Over the past three years, we learned much about convenience and accessibility and we tackled a remodeling job a few weeks ago. Rob, one of our nurses, did much of the carpentry work. We brainstormed for ideas. Today, Daniel's room is friendly and welcoming, but at the same time efficient, with hospital convenience.

Creating a room for a long-term patient requires a little creativity. Since much of his time will be spent in bed, make sure to paint the walls in friendly colors, so he'll have something to look at besides plain white. The floor should be easy to clean. We installed a hardwood floor, which can be swept and mopped and is stain and dirt resistant.

There are never enough electrical plugs. Make sure you choose a room with at least a double plug on each wall. Then buy a surge protector strip for each plug and mount it on the wall beside the plugs. Set the bed up so it is accessible from both sides and provide a headboard for supplies and equipment, such as nebulizer, suction machine and accessories. Place a television across the room with a DVD player or VCR, both for the patient and the home health nurses who will be spending long hours watching your loved one. Presumably, you'll spend time in the room as well and may want to watch a movie.

In one corner of the room, place a small desk or table for the nurses with storage capacity for the medical chart, magazines and writing utensils. Hang a dry-erase board above the desk, so you can keep track of medications, feedings, neb treatments, and other pertinent information. On that board, write your cell phone number or work number. Place a bottle of hand deodorizer on the desk and/or near the door. Nurses will use it frequently and so should any visitors.

The phone should be in the room, by the nurses' desk, but with a long cord to reach the patient, should the nurse need to call you or the emergency response professionals. It is best, not to use a cordless phone, because it will not work during a power outage. Have handy the phone numbers of your patient's doctors, the pharmacy, the home health agency, the equipment vendor, the electric company and the water company. Also have available your physical address and directions, if you live out of city limits.

As soon as you can afford it, buy a generator! We once had a power outage that lasted thirty-nine hours! Auxiliary batteries only provided about eight hours of juice. When there is a county-wide power outage, generators sell out quickly, so be prepared. I found out the hard way.

Supplies must be stored in or near the patient's room. Provide lots of storage space. For smaller items, plastic bins and drawers work nicely. The equipment vendor will help set you up with a basic supply list, from which you will reorder each month. It may take a couple of months before you get the hang of this. Don't panic. Vendors are more than happy to assist you.

You will also want to provide various shades of lighting, from bright to dim, so the nurses can perform their duties while the patient sleeps, and yet, there is light available for skin inspection or blood draws, if necessary. Place a fan, where it can provide gentle cooling if needed to cut air conditioning costs.

If you use oxygen, you should not use an open flame heater. Oxygen greatly enhances flammability of other substances, so keep far away from flames. An oil-filled radiator type heater is convenient and provides various levels of warmth.

Daniel received many toys over the years and his room became cluttered. We ran a shelf about sixteen inches below the ceiling along two walls of his room for all his cars and stuffed animals. We keep only a few items in close range, yet we can exchange them once a week to keep things interesting.

An IV pole by the bed holds gravity drip feedings if your loved one has a feeding tube. Always keep a pitcher of water in the room for flushes before and after feedings and medication and to provide additional water. See if your supplier can bring you an over-the-bed table. I don't know what we would do without ours! Two of our nurses, Kathleen and Sharon, chipped in to provide a comfortable office chair with wheels, so caretakers can quickly roll from the nurses' desk to Daniel's bedside. Somewhere in the room, place a battery operated clock. A radio is helpful and a small bookshelf, if the patient reads or enjoys being read to. Now that you're all set up, you may hang pictures, posters or quilts to finish the look of the room.

It may sound like a lot to set up a room properly, but we didn't do it all at once. Furniture can be purchased cheaply at garage sales, and with a little imagination, a room can look friendly in no time. Remember that this is most likely a long term investment. Convenience will make your nurses happy and increase your chances of keeping them around. An appealing room with brighten your loved one's day and draw you in to spend time with him or her. And, in the long run...anything is better than staying in a nursing home!