Back in 2002 when both Nicholas and Matthew attended the same Elementary School they had off the months of January and February since the school was year-round. Once March arrived the clinic based setting for speech and occupational therapies for Matthew - who was almost six resumed. Both therapists noticed significant regression and discussed with myself the pros and cons of a feeding tube with their recommendations. They felt that his lack of nutrition would interfere with his ability to concentrate and attend to classroom expectations.
I started to explore the possibility of my son with a tube by researching online and joining a number of feeding groups with other parents who have experience in this area. I headed over to the library seeking some books that I hoped would explain how the procedure is done and the care of the tube in the home and community.
Located in the health and nutrition section I came upon Children and Youth Assisted by Medical Technology in Education Settings: Guidelines for Care. This is a spiral bound notebook consisting of 394 pages including an extensive glossary and index. There are roughly sixty pages of checklists that are perfect for photocopying and utilizing on a daily basis. These include the following:
Gastrostomy Feeding Bolus Method
Gastrostomy Feeding Slow Drip or Continuous Method
Skin-Level Gastrostomy Feeding – Bolus Method
Nasogastric Tube Feeding – Slow Drip or Continuous Feeding
Ileostomy Pouch Change
Tracheostomy Tube Care
Manual Resuscitator Bag with Tracheostomy
Ventilator Machine and Circuit
The formats for these charts are adapted from Children’s Hospital Chronic Illness Program. Charts are organized with the student’s name, person trained and position in the top left corner. The columns allow for six dates to be entered under the following headings, Name and Procedure, Preparation, Identifies Supplies and Procedure. Located within these sections are numbered specifics anywhere from five to twenty. Many of the lists are two pages with the final line for the parent or guardian to sign and date.
Children and Youth Assisted by Medical Technology in Education Settings: Guidelines for Care is divided into two sections. The first is the Educational Settings with the second one entailing Guidelines for Care. The idea for this book started when "children with increasingly complex medical conditions and nursing needs were appearing at the schoolhouse door." This is geared to parents and professionals and written for those who have little medical background.
Chapter one gives an overview of the nurse’s involvement, teacher’s feelings along with administrative duties. Chapter two discussed the laws and education acts as they relate to children and their health problems. Chapter three covers the team players and how they coordinate the assessments, training and monitoring of the system put in place.
Chapter four refers to the transportation of these children to and from school, the special seats and positions they must remain in with specifics on the training of the bus and school personnel in these roles. Chapter five goes over latex allergies and HIV issues. Also discussed are clinical trials that children might be enrolled in, laundry and pregnant women. Each chapter consists of references, suggested reading, manuals, manufacturers and resources. There are many examples from the professionals that have contributed to Children and Youth Assisted by Medical Technology in Education Settings: Guidelines for Care.
My main purpose in borrowing Children and Youth Assisted by Medical Technology in Education Settings: Guidelines for Care was to learn the correct terminology for the variations used in tube feeding along with the precautions and tools needed. There are diagrams that show the placements of the tubes as well as the pump, feeding bag, syringe and clamp.
Upon my next visit with the clinical based therapists I mentioned what they thought of bolus feedings and wanted their recommendations on which pump and clamp is best. They were happy to know I was getting educated prior to the final decision on if a tube would be placed. I spoke with the school administrator in relation to the nurse’s duties and hours at the school and suggested I would be able to assist in the feeding of my son if it came down to this procedure.
Also listed in Children and Youth Assisted by Medical Technology in Education Settings: Guidelines for Care are points to remember, observations and possible problems that require immediate attention and those that are non emergencies. There are step by step guides on how to change tubes, along with the clean up of the area and how to dispose of tools and waste. The pages with explanations have these listed in italic font.
The details and diagrams help to grasp the enormity of this decision while explaining how the education system handles students with special health care needs. This book is the manual to help prepare all those involved in the daily lives of the children and also adults who must utilize these pieces of equipment.
The foreword is written by a college student living with a ventilator that required treatments and feedings while attending school. She states "this book provides an opportunity to challenge the perspective of both groups and to allow for a different, but equally important, kind of educational exchange to occur."
A great reference tool to use through out the student’s school years with the capability of copying the needed checklists. There is a wealth of information on how the digestive system and respiratory systems work with illustrations to help all family members understand the child who requires medical technology.
Previously published on Epinions
Children and Youth Assisted by Medical Technology in Education Settings: Guidelines for Care is available at Amazon
Matthew's Pediatrician referred us to Children's Hospital to see a GI Doctor. Over that summer Matthew was hospitalized for dehydration. While there I spoke with a Nurse who introduced me to a Mother who had a small child with a feeding tube, so I was able to observe how the process worked. I also borrowed a video from the Regional Center that was on various feeding tubes. I was still against the idea with the GI Doctor agreeing and the Pediatrician thinking it was not necessary.
We ended up getting a prescription for Ensure Plus for Matthew to consume two cans a day. I had researched online both Ensure and PediaSure and decided on Ensure Plus due to the number of calories. At this time I also requested a speech assessment through the school district and stopped sessions with the two therapists who pushed for this.
Matthew did gain weight, but developed PICA as a result of the Ensure Plus. I found Naturade Total Soy, a nutritional supplement that we were able to get a prescription for and started Matthew on that until he eventually went to soymilk, which he still drinks to this day.
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