lino hospitalstay 2005

Gearing Up for a Hospital Stay and Protocol Preparation: 

Gearing Up for a Hospital Stay and Protocol Preparation Presented by: Julie Lino, President, Rocky Mountain Chapter Families of SMA Conference 2005

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I have 3 kids  Jamie & Troy have SMA II. We’ve survived five hospitalizations since 2003

Look & Listen NOW: 

Look & Listen NOW Purchase a stethoscope and listen to your child while healthy Pulse Oximetry machine … check oxygen saturation (SAO2) & heart rate Observation - watch him or her breath!

These tips are the compiled opinions of SMA families: 

These tips are the compiled opinions of SMA families Every SMA child is different … every illness and hospitalization is different. What worked for us, may not for your child.

1. Be the Teacher ...: 

1. Be the Teacher ... Know and be okay with the fact that most people … even medical professionals ... know little about Spinal Muscular Atrophy. It may become your “job” to educate the medical team on techniques you’d like to implement.

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You know your child best and can help the medical team. Decisions regarding ventilation: Oxygen, BiPap, IPPV, vest, intubation and tracheotomy. Learn about them now. Intubation BiPap

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There will be situations of conflict between you and your medical team. So, try to remain calm and BE FRIENDLY  !

2. Prepare NOW: 

2. Prepare NOW Gather reference materials you would like to have with you in case of an emergency and store in a binder or folder. Review this information while waiting in the emergency department or your child’s room.

 Binder Contents: 

 Binder Contents Your child’s medical protocol (if prepared) Do Not Resuscitate order (if you have one) Photocopied SMA reference articles and respiratory protocol. Notebook and pen … Document everything! It may become a valuable reference tool later on. Telephone numbers and email addresses.

3. Develop Communication Signals: 

3. Develop Communication Signals Hand or eye signals work great if BiPap or Intubation hinders speech. Simple “Yes” & “No” may be all you need. (Troy is holding up  which means NO for him) Vest

4. Bring Your Own Equipment: 

4. Bring Your Own Equipment If you always or even only occasionally utilize specific equipment at home during an illness … BRING IT WITH YOU! You may need to use it while waiting in the E.D. (Refer to Dana Craven’s “Part I: Powering Your Medical Equipment on the Road” article in the 2005 spring-summer issue of FSMA DIRECTION.) Many hospitals do not utilize the JH Emerson CoughAssist or it may be in use with other patients.

5. Protocol: 

5. Protocol Protocols are not necessary ... but from personal experience, they have more value than verbal requests from the parent. Have this document reviewed by your PCP, PT/OT & SMA experts for content. Run it by your insurance case manager . … (if you have one)

6. Nutrition: 

6. Nutrition Discuss this issue with your doctors NOW and review Dr. Swoboda’s recommendations. Include this in your child’s protocol and a copy in your binder. According to Dr. Swoboda, SMA children should not go more than 8-12 hours without nutrition … especially when they are ill or recovering from surgery. Learn about TPN / PPN Vs. glucose & potassium solutions. NG / NJ Tubes are temporary feeding tubes and G-tube is permanently placed.

7. Ask Questions: 

7. Ask Questions Don’t be shy. If you want to know what a machine does … ASK! If you don’t understand … ASK! Ask to view X-Rays and get paper copies (if available) The medial team appreciates your involvement and desire to educate yourself.

8. Voice Your Opinion: 

8. Voice Your Opinion Don’t be afraid to question procedures. Request consults with your PCP, doctors, SMA experts across the country and contact FSMA national and/or chapters. Connect with other SMA families for their opinion If you encounter resistance or difficulty with a medical team member, seek higher authority. and remember, be friendly!

Hierarchy of Hospital Staff: 

Hierarchy of Hospital Staff

… Be the Teacher: 

… Be the Teacher Make educated requests. Inquire about procedures you’ve heard about which they have not opted to perform. YOU MAY BE THE FIRST TO IMPLEMENT A TECHNIQUE OR PROCEDURE IN YOUR AREA!

9. Insist on Hand-Washing!: 

9. Insist on Hand-Washing! Although they appear clean … hospitals are a breeding ground for germs and viruses!  Insist that everyone wash their hands … the nurses, doctors, friends, and that includes YOU too! If anything hits the floor … wash it or toss it! Ask friends and family to stay away if they are ill.

10. Your Child’s Routine: 

10. Your Child’s Routine For both respiratory & positioning. Work with the team to develop respiratory treatments that work! Make sure the staff knows how to position and align your child from head to toe.

11. Never Miss Rounds: 

11. Never Miss Rounds If you are in the ICU or in a room, find out when the doctors make rounds. Tell your nurse you want to be notified and take part in the discussions. You can be part of the decision and learn what the ‘plan of action’ is for the day.

12. Stay With Your Child: 

12. Stay With Your Child If at all possible … be there! Shift change takes place every 12 hours. You may not have the same nurse or physician twice during your child’s stay. Arrange for a friend or family member to stay if you are unable to.

13. Take Time Away: 

13. Take Time Away On the flip side … take time to rest, shower, eat and spend time with your other children. Utilize friends and family to take a shift so you can recharge.

14. Play, Smile & Make It Fun! : 

14. Play, Smile & Make It Fun! Don’t forget that your child, is still a child. When your child’s illness is subsiding, laughter is a healer. Play games, color, read …

15. Bring Photos: 

15. Bring Photos The medical team is seeing your child at their worst … Show the team that your child is a vibrant joyful child 90% of the time.

16. E-mail : 

16. E-mail  Many hospitals offer Internet access to families … take advantage of E-mail to communicate to family and friends. Or, if you get the opportunity to go home and shower, send an email. It’s a good way to recap the day’s events and spend more less time on the telephone.

17. Siblings: 

17. Siblings We often avoid discussing the “hospital situation” with sibling(s) Take advantage of the school and/or hospital social worker Reassure them you love them too and remember, they too need time to be with you. Let them come to the hospital, ONLY when your child is feeling better and there are no restrictions.

18. Classmates & Friends: 

18. Classmates & Friends If your child is school age, make sure you notify teacher, counselor, nurse. The school counselor may want to address these needs. Suggest the teacher send a letter home to parents. Children friends exhibit anxiety in variety of ways and they need to be able to express their concerns. Don’t forget to inform the teachers of your other children.

19. Utilize Friends & Family: 

19. Utilize Friends & Family Friends & Family always want to help … so let them! Assign them simple tasks such as making meals, laundry, running errands, taking care of your other children.

and Finally ….: 

and Finally ….