Gearing up for a Hospital Stay and Protocol Preparation
by Julie Lino, Rocky Mountain Chapter
Hospital stays can be a complete unexpected event, so being prepared ahead of time can eliminate some of the
burden and stress when an emergency situation presents itself. There are many things you can do before that critical
time arrives that may make a difference in your child's care and outcome.
Look and listen to your child NOW while they are healthy. Listen to them and learn their healthy breath sounds.
You can purchase an inexpensive stethoscope at any drug store or uniform shop. Learn the different chambers/lobes
of the lung. This not only will help you hear a difference when they are sick, but will help your child become familiar
with the medical devices. Let them be part of their own respiratory treatment by letting them listen to you, brother,
sister, pets, dolls, etc.
Pulse Oximetry. Health insurance and Medicaid often cover this piece of equipment. Periodically check their oxygen
saturation (SA02) and heart rate. Check it while sleeping and awake. Learning your child's healthy SATs will help
when he or she becomes ill. These SATs change due to a variety of normal activity, but also can be a red flag to an
underlying infection - i.e. the heart pumps harder when trying to get more oxygen.
Use your sense of observation. If you don’t already, pay attention to your child's breaths. What is your child like when
“healthy”? Discuss ‘labored breathing’ with your doctors. In younger children, if they develop a collapsed lobe
because of a cold & excess fluid, you can sometimes visually see a difference in their chest --- perhaps a lower nipple
or dip under armpit.
Every SMA child is different. You will be the best resource for your child’s medical team.
Hospitalization Tips
The following tips are thoughts compiled from various SMA parents based on their past hospitalization experiences.
These tips are for your information only and are not to be interpreted as suggestions for medical treatment.
Know and be okay with the fact that most people, even those in the medical and respiratory professions know little or
nothing about Spinal Muscular Atrophy. It may be your “job” to educate the medical team caring for your child. This
may likely apply when referring to SMA protocol, techniques and procedures that are discussed at FSMA conference
sessions.
You know your child best --- his / her routine and what they are like when “healthy.”
Go in with the possibility you might have to make a decision regarding ventilation: BiPap, IPPV, vest, intubation and
tracheotomy. Explore these options NOW & investigate their outcome / procedure.
Try to keep calm and be friendly … there WILL BE situations of conflict with your medical team. Remember, you will
attract more bees with honey!
Prepare NOW for a hospital stay (or the next one.) One can never be emotionally prepared for a stay, but being
prepared with materials will assist you and your medical care team. Make a pocket folder or binder and fill it with
reference information. Have this file readily accessible in case of an emergency. You may be able to review the
information while waiting in the ER and/or once you get settled in a room. Binder contents:
Protocol for your child (see sample below) and “Do Not Resuscitate” order (if you have one)
Copies of articles printed from this website, from the FSMA conference and newsletters, and pertinent emails. If there
are articles and procedures you’d like your medical team to adhere to, provide copies for them. Also made sure a set
gets put in your child’s chart. Every nurse and doctor has access to it. (You may have to refer them to it.)
A notebook and pen to journal - documenting your emotions, procedures, medications, anger, ... everything. This is
not only a great stress release, but also a valuable tool for reference.
Telephone numbers & email addresses of SMA families you’d like to connect AND doctors with whom you want to
consult.
Develop communication signals. If your child is old enough, develop hand or eye signals. Simple "Yes" and "No"
signals work wonders. If during your stay, BiPap or intubation are necessary and speech is hindered, these hand or
eye signals come in handy and help reduce stress on everyone. And don't forget to inform your medical team of your
signals.
Equipment. If you use equipment at home for your child’s daily care, BRING IT WITH YOU TO THE HOSPTAL! It
will likely need to go through a bio-med check at the hospital, but bringing it is very important. Many hospitals do not
have or utilize the JH Emerson In-Exsufflator / CoughAssist OR it may be in use with another patient. Most
importantly, your child will likely need a respiratory treatment or be on BiPap in the ER and the hospital’s respiratory
team may be slow in getting to your child and you’ll want to be pro-active in your child's care.
Protocol. See the SAMPLE HOSPITAL PROTOCOL. If your child has had previous hospitalizations, recall the
experience and lay out both good and bad techniques. Protocols are not necessary, however, it may be more
valuable to have your requests in writing. Have this document reviewed by your physicians, SMA experts and
perhaps even your insurance carrier.
Know your child's nutritional needs. Get with your doctors NOW and discuss a SMA nutritional protocol. SMA
children should not go more than 8-12 hours without nutrition. Normal IV solution is not considered “nutrition” for an
SMA child. They will require specific solutions like TPN (Total Parenteral Nutrition) or PPN (Partial Parenteral
Nutrition.) If you opt for these solutions, they must be requested early in the day because it takes the pharmacy 6-8
hours to prepare. It is typically administered over a 20-23 hour period beginning at midnight. If you miss the pharmacy
cut off time, you could end up waiting an additional day.
Ask questions. Don’t be shy … ask questions of the nurses, respiratory therapists (RTs), and doctors. They are
there to serve you and your child and will have a lot more respect for your requests if you ask intelligent questions
and educate yourself. If you do not understand a procedure or term, ask them to explain it. Ask to view X-rays and
get paper copies (if available.) It’s also okay to question their procedure. If you are unsatisfied with their response or
having difficulty communicating with the staff, seek higher authority – but remember … to be friendly. The hierarchy of
hospital staff, in decreasing order of authority:
Attending physician
Fellow
3rd-year resident
2nd-year resident
1st-year resident or intern
Don't be afraid to voice your opinion and become part of “the team". If you want to be involved in the decision
making for your child, you can. Again, don’t be shy. If you are able to attend the FSMA conference, you can gain
knowledge and practices that may be foreign to your medical team. Not all non-invasive procedures discussed at the
conference are common practice. You will become the teacher. Make educated requests. Don't ask for a certain
treatment, medication, etc. without knowing why --- that said, still inquire about procedures you’ve heard about that
they have not opted to perform. Remember, you may be the first to implement and/or introduce something to your
area. And always make inquiries about everything you don't understand. And don't be afraid to contact experts in
other parts of the country. FSMA national office, FSMA chapters, Dr. Schroth, Dr. Bach, and Dr. Swoboda have been
wonderful resources when we were unsure. Connect with them now to verify their availability.
Insist on hand-washing! Respiratory infections are the most common cause of death in SMA patients. Hospitals
are a breeding ground for them so insist on hand washing. Some care providers are great about hand washing, and
some aren't. Everyone, no matter what their role, should wash hands. This means you and your guests too! Keep as
much off the floor as possible. Germs are tracked in from every floor in the hospital. If a toy, pencil, pillow, etc. hits
the floor, wash it or trash it!
Let the hospital staff know your child's routines, for both respiratory and positioning. For example, tell them if
you always use the CoughAssist with 2 second inhale and exhale, followed by 5 quad-coughs, then suction with a #8
nasal catheter. Be specific. Each respiratory therapist (RT) has his or her own technique which may compliment or
conflict with your routine.
Since our kids are floppy, positioning is very important. Let them know how to position. They will need to adjust and
position your child from head to toe. Proper use of his or her orthotics, PT/OT can be written into his chart.
Never Miss Rounds! Once admitted to the hospital, one of the most important rules is never, never, never miss
morning rounds. Find out when they are and tell the nurse or attending doctor you want to be involved. This is when
important information is discussed, decisions are made for the day, and you have the ear of the entire medical care
team. If you are gone during these, ask the nurse or doctor to review his or her chart. They don’t always voluntarily
inform you of what transpired.
Spend as much time at your child's bedside as possible. Your work / job situation may not always allow you to be
there, but if at all possible, be there. Take shifts with your spouse. If the two of you cannot be there, bring in "the
troops" and ask relatives and friends to help out. Nurses and doctors change shifts every 12 hours. You may never
see the same nurse or doctor twice during your hospital stay and you will be your child’s best resource for
information. By being there, you will see positive and negative trends throughout the day and night --- and be involved
in the decision-making. Almost every hospital allows parents to spend the night with their child, either in their room,
PICU and/or the hospital may provide “parent sleep rooms.”
Take time away. I know I said spend as much time as you can at the bedside, but take time to sleep, to eat and to
recharge. This is where friends and family come in.
Play, smile and make fun. Throughout the worry and stress, we sometimes forget that your child is still a child. Take
time to play with them, decorate the room, etc. Smiling and playing may bring them to better health sooner.
Bring pictures of your child to the hospital. The medial team is seeing your child at their worst. Photos help to
remind the medical team that your child is a vibrant, joyful child 90% of the time.
Take advantage of EMAIL. Most hospitals have internet access available for families. Or perhaps if you live close to
the hospital, send email when you go home to shower and change clothes. Sending a daily or biweekly email to
family and friends is very helpful in a variety of ways. It allows you to recall the day’s events and spend less time on
the telephone regurgitating the same story. When you are home, you need to rest and spend time with your other
children, not be on the phone.
Don't forget about siblings. When any tragedy strikes, most often we avoid discussing it with other children or even
leave them out completely. Depending on their ages, it’s okay to discuss some of what is going on with the children at
home. Most hospitals have a social worker and/or psychologist specifically available to talk with siblings. Get
connected with them immediately. Reassure them you love them too. Remember, they need time with you and time
to play.
Classmates and friends. If your child is of age to attend school, make sure you notify their teacher, their sibling's
teacher, school nurse, principal and school psychologist. Many families never encounter health challenges like the
ones we face daily. Most children and adults have a difficult time when a child is hospitalized. If you child's hospital
stay becomes extended, it is a good idea to have the teacher send a note home to inform parents. Children can
exhibit unidentified anxiety and 'act out' simply due to worry for their friend and themselves.
Utilize your friends and family. They will ask, "What can I do?" Have a list of things they can do ready for them,
ranging from bringing a change of clothes to the hospital, providing a meal at home, helping with laundry, watching
your other children at home, running errands for you, etc.
Sample Hospital Protocol
Basic information: Child’s name, SMA Type, Date of Birth
Provide a brief description of what SMA is and how it affects your child.
List previous hospitalization locations and dates. Include the number of days intubated, if applicable.
List steps to be taken within the fist 12 hours of hospitalization. Some examples are:
Order TPN via IV
Transpyloric nasogastric tube for nutrition
Nasogastric tube placed for air release resulting from BiPap
The following doctors wish to be notified: (provide doctors name, location and telephone number)
The following doctors and SMA experts have offered their consultation at any time during hospitalization (provide
doctors name, location, credentials and telephone numbers.)
List daily medications/formulas your child is currently receiving and also any allergies. Also list medications previously
taken that worked as well as those that didn't.
List your exit goals: Provide quick bullet points of how your child is at home.
On room air or oxygen at home? How many liters?
Awake SATs: Heart rate & SAO2
Resting SATs: Heart rate & SAO2
Nutrition: G-Tube, eats orally, soft foods only, etc.
Provide previous hospitalization tips, for your use and theirs.
List respiratory needs.
X-rays. If you have had previous hospitalizations, you will want to list any issues which occurred. Pneumothorax,
atelectasis, etc.
BiPap settings. If you use one at home, list settings. If not, refer to Dr. Schroth’s recommended SMA protocol and
settings.
Suggested uses of procedures previously used. (For example, a Double Lumen Nasogastric Tube to release the air
build-up in tummy from BiPap.)
Respiratory therapy (RT) treatments. This is where you would list your home routine and previous experiences that
worked for your child. Recommended every 2-3 hours (Q2 & Q3) in early treatment --- can be reduced to Q4 once
respiratory infection is dissipating. Refer to Dr. Schroth’s protocol.
Fluids and Nutrition.
In general, SMA children are a difficult “stick.” Using a warm cloth and light to find a vein helps to prevent multiple
sticks. If you have preferred method, list it. Also mention any history with IV. For example, if your child’s IV lines
collapse quickly and need to be monitored, etc.
Order “TPN” to be administered via IV. It can take a while for the pharmacy to prepare and deliver this, so order upon
admission. According to SMA expert Dr. Kathryn Swoboda, MD, SMA patients should never go without nutrition for
more than 8-12 hours!
If your child is SMA Type II and/or does not already have a G-tube, ask about a trans-pyloric nasogastric tube upon
admission. Once your child is unable to eat orally, they will need nutrition ASAP. Placing this NG-Tube ‘trans-pyloric’
will avoid reflux in conjunction with BiPap. This is a temporary feeding tube that is placed into the nostril, through the
stomach into the small intestine … providing nutrition and some medications. This procedure is performed in
radiology and will need to be scheduled, so request it early!
Orthotic bracing and physical therapy (PT) and occupational therapy (OT) concerns.
CC: your doctors and therapists. Make sure they all have a copy of your protocol.