Tips / Tricks

When making a trip to
Dr Bach's Hospital "UMDNJ"

1) Dr Sinquee is the Director of the PICU. She's great! You can call the 
    UMDNJ  "PICU" at (973)972-3784 and ask for her, she has always called us
    back in a timely manner. She helped us arrange our entire visit, and spoke
    to our current hospital ICU Attending to help arrange everything. She also
    helped produce their facility credentials as well as Dr Bach's to give to
    insurance to aid in transport approval.
2) The facility itself is old but has a fantastic, friendly staff. Its not in the safest
    area so I, nor the staff would recommend that you wander off alone after
    dark, if you are not from there.
3) There was no place to do laundry at the hospital, so either bring enough
    clothes, or you may have to walk down the street to a LaundryMat.
4) The cafeteria also houses a Burger King that's open later than the regular
    cafeteria which has short hours, and closes around 2pm on weekends.
5) A great place to order food is Andro's Diner, and they deliver to the hospital.
    (they will call you and you meet the driver downstairs in the lobby)
6) They sell Dunkin Donuts & Dunkin Coffee in the cafeteria, or there is an
    actual "Dunkin Donuts" location across the street from the hospital, as well
    as a grocery store. Walgreens & KFC are down the street also. (within
    walking distance)
7) They do provide WIFI for guests, so ask the staff how to connect.
8) Some of the PICU rooms have a chair that the legs pull out to make a
    skinny bed. Some rooms only have a sitting chair. Most rooms are "double
    patient" rooms with a restroom (sink & toilet) attached. But, the staff
    mentioned they try to give SMA patients their own room because they come
    packing so much stuff!!
9) There is a shower in the hallway for parents to use.
10) The flight transport company we used was pretty good. They DO NOT
     accept Medicaid, and you must pay IN FULL "UP FRONT" before you can
     take your flight. They were one of the few capable of flying the patient
     "with a vent", "intubated", had an RN, Paramedic and 2 pilots on board. They
     allow 2 family members to fly with the patient, and the patient can "lie flat
     on a stretcher" and was not required to have to be able to sit up in a chair.
    They had their own vent for the flight, oxygen, suction, and CAN plug up the
    cough assist in flight. (Bring your jacket, its freezing cold on the plane!!!) Price: I'm sure varies, and the earlier heads up you can give them so they can
    move patients each way, possibly might affect the cost. Private insurance
    picked up about 80% of the flight. The other 20% was privately paid. The
    flight cost about $35,000 from Dallas to Newark, round trip.

Sign up for the "International Patient Registry"

Immediately after diagnosis, please visit this website to enlist your child as a member. It is FREE and its just forms you fill out giving them information. This registry will alert you when a clinical trial of something of its kind is available for you or your child based the information you give them.
PLEASE SIGN UP to stay up to date!

Venting the Feeding Tube

Some people use Farrell Bags:
http://www.corpakmedsystems.com/Supplement_Material/Supplement
Pages/Enteral/Farrell/Farrell_InstrPoster.html

Personally, they did not work for us. We do what many SMA families do and hang a 60mL syringe upright (without the plunger) hooking the pointed end of the syringe into the larger port of the feeding tube extension. Keeping the extension tube unclamped so that any air in the belly may vent out. We then, hang the tip of the feeding bag line, simply into the top of the syringe, and tape it so it doesn't fall out. Your food will then drip into the syringe, down into the extension line, to the belly, and any air can return up the line and exhaust out of the open syringe.

This link is to a syringe overflow alarm device:
http://www.amazon.com/Rialco-84010-Flood-Sensor-1-Pack/dp/B000G1ME8E

Below are pictures of the syringe vent/feeding setup we use for Carter:
and the link is to a product that alarms if the syringe overflows.