Icall my patient Dorothy because her favorite movie is The Wizard of Oz. I truly needed my brain, heart, and courage to earn Dorothy's trust and provide her the best care. It takes a little longer to get to know an ambulatory patient. Appointments are usually accomplished as efficiently as possible. With Dorothy, I had been given information before meeting her for our first appointment-or you could say I was given a "cautionary" warning; Dorothy's reputation precedes her wherever she goes.
I am a longtime nurse with a new position in the gastroenterology and nutrition department. I am always ready for a new challenge and experience. Dorothy became one of my first gastroenterology primary patients and also my first gastrostomy-tube (g-tube) change. Dorothy is 18 years old and has Smith-Lemli-Opitz syndrome. Smith-Lemli-Opitz syndrome is an autosomal recessive developmental disorder that affects many parts of the body. Characteristics of Smith-Lemli-Opitz syndrome vary widely from mild physical abnormalities to severe and life-threatening organ dysfunction. Many affected children have characteristic features of autism. Malformations of the heart, lungs, kidneys, gastrointestinal (GI) tract, and genitalia are also common. Feeding difficulties, motility problems, and slow growth are factors that bring these children to the gastroenterologist.
Dorothy is nonverbal and g-tube dependent for nutrition. That is the easy part of caring for Dorothy. Dorothy does not like coming to the hospital and is difficult to handle. She is self-abusive, hitting herself and biting her hands, and abusive to others if you get in her line of fire. She is also difficult to handle at home, which is why her mother brings her to the GI clinic for assistance with g-tube changes.
Meeting Dorothy presented nothing unusual at first. She was a slight young lady in her wheelchair with very alert eyes watching all that goes on around her. I spoke directly to Dorothy, introducing myself to her and her mother. Dorothy sat calmly in her wheelchair as I prepared for the g-tube change, discussing with her mother how best to approach this procedure with Dorothy. Then the tornado begins!!
The objects in the room began to swirl. My two assistants and I were being tossed around by a 100-lb ball of determined energy. I had about 6 inches of space to change the Mic-G button g-tube, squeezed in between Dorothy's mother, my supervisor, and one of the doctors trying to hold Dorothy stable enough to do the g-tube change. I had well prepared for the procedure and changed the g-tube in record time, but in my inexperience with g-tube changes, I forgot to close the end ports. Gastric contents come spilling out, getting Dorothy's clothing all wet. Easy enough to check the pH with gastric contents everywhere!!
Toto, We're Not in Kansas Anymore!!
As soon as we get Dorothy up off of the examination table, she began hitting herself. Her mother intervened and got Dorothy's wet clothes changed. As I cleaned up the examination room, Dorothy's mother complimented me on my timely efficient change of the g-tube and asked me to come home with her. I immediately felt what this family deals with on a daily basis. I took Dorothy's hand to keep her from hitting herself, and she held my hand willingly. I thought I had made progress with communicating to Dorothy that I only want to help her, but I did not see the kick coming. Wham!! She got me good in the leg. I guess she is good at communicating how she feels after all.
Follow the Yellow Brick Road!!
Dorothy has many GI issues that bring her to the clinic regularly. I take each encounter as an opportunity to connect with Dorothy and let her be comfortable with me caring for her. Dorothy's mother contacts me over the phone in between visits and we have developed a good working relationship regarding Dorothy's care needs.
My GI experience and knowledge grow as I address Dorothy's many g-tube, skin care, and GI needs. Over the next 2 months, we deal with very problematic skin breakdown issues. Her mother's wish is for Dorothy to have a normal g-tube site. Dorothy's g-tube leaks often and is affected by slow gastric emptying and constipation. The acid of the drainage has caused excoriation of the skin surrounding the g-tube stoma. With the primary doctor's orders, Dorothy is placed on medication to aid in gastric motility and we continue to be creative in helping Dorothy have regular bowel movements. I consulted my colleagues in GI and ostomy care, putting our heads together to see what would work to help heal the skin at the g-tube site.
Care of g-tubes requires knowledge of skin care, the mechanics of infusing nutrition per g-tube, and supporting caregivers in their home needs. Skin care needs may often be secondary concerns as parents concentrate on achieving the nutritional requirements of their child. The skin surrounding the stoma, however, has immediate needs of postprocedural care where the g-tube site is healing. This is a prime time for infections and discomfort, but these can be treated by cleansing the skin with 1/4 strength peroxide if a moderate amount of crusty drainage is present during the first week. Rinse with saline and dry well. As the stoma heals, cleansing the area with mild soap and water is sufficient. Children can bathe and swim after 2 weeks of healing of the g-tube sites. Other factors of maintaining intact and infection-free skin rely on the sizing and stabilization of the g-tube itself.
Movement of the g-tube or an incorrect tube size can cause granulation tissue to form. This type of tissue will drain or bleed and can cause discomfort for the child. Many types of treatments exist for g-tube skin-related problems. Some frequently used products are absorptive dressings of Allevyn and Aquacel. These dressings can be expensive and not covered by insurances. Alternative, inexpensive treatments can be barrier creams of A+D ointment or Balmex. Ostomy creams, powders, and pastes can work with the g-tube patient as well. Proton pump inhibitor medications are frequently part of the g-tube patient's treatment plan. This lessens the acidity of the gastric content drainage that may leak from the g-tube site. With utilizing the expertise of the ostomy nurse, physicians, and nurses, a solution can be developed to treat any or all g-tube skin care concerns.
Dorothy's g-tube skin breakdown is very painful, affecting her day at school and limiting her usual activities that she loves. Because of all the drainage, she has to have her clothes changed several times while at school. This cannot continue and it is not the normal environment for a g-tube site.
Dorothy is even more difficult to handle at this time. Her behavior in general has become such a concern that her psychiatrist has adjusted her medications. She is difficult at school, which is not her norm because she enjoys school activities so much. I know that the pain of the g-tube site is a factor in Dorothy's behavior and we need to heal the site and get rid of the pain. Dorothy cannot speak but she gets her point across regarding how much discomfort she is having with her tummy area.
We're Off to See the Wizard!!
My coworkers call this the "arts and crafts" of g-tube care. This is when you try any approach that has any possibility of helping the problem. I made a trip to the supply area of the hospital and checked out what was available for skin care. I consulted with the ostomy nurse and tried measures learned long ago to treat skin breakdown.
After trying several skin products, dressings, and methods, finally a combination of barrier creams, medications for acid reduction, and gastric emptying helps the skin begin to heal well and stay intact. Dorothy's mother diligently keeps on track with the skin care method and administering the medications. Dorothy's mother is very pleased. Her behavioral medication adjustments are working as well, and she is much calmer during the clinic visits. Despite my constant chatter and singing about Oz (trying to make her smile), however, Dorothy just wants to go home.
There's No Place Like Home!!
Dorothy's mother keeps in touch with me by phone. We speak weekly or so to keep things in check concerning Dorothy's g-tube site, constipation, and g-tube feeds. Dorothy is having regular bowel movements, g-tube feedings are infusing well, and the skin around the g-tube stoma is healed.
When Dorothy and her mother come for the December gtube change, the site looks the best it has ever been. Her mother gives me a tearful appreciative hug and thanks the GI staff for all their help and just being available whenever she needs help with Dorothy. Dorothy is happier too. She lets me hold her hand and often takes my hand as soon as I enter the examination room. This pleases me very much. She is less selfabusive with the change of her behavioral medications. She is also communicating with a little bit of sign language. Dorothy still does not like the g-tube changes but the fight over the procedure is slightly less vigorous. I still have to be alert to the kicks, but they are more like love taps now. It is as if Dorothy is saying, I don't like this but I know you are okay in my book.
Somewhere Over the Rainbow!!
Her mother's dreams come true, having a manageable g-tube site for Dorothy. When things go well in ambulatory medicine, you do not have as much contact with your patients and families. This is as it should be. I know I will have future contact with Dorothy and her mother for the every 3-month g-tube changes. I will continue to try to get a smile from Dorothy at every visit, even if I have to resort to the sure thing that will bring on that smile: the scarecrow, the lion, the tin man, and, of course, Toto.