Trache and G-tube (former), Autism (on the spectrum)
Forget Me Not!
Saline is like water. Saline treatments keeps our trache babies respiratory moist and helps prevent mucus plugs.
Clean and change trache ties everyday.
Have a back-up oxygen tank in the room with a spare ambu-bag
You should have an oxygen tank positioned under your vent with an ambu-bag attached.
Your oxygen tank should be opened but the gauge closed so that when you need oxygen in an emergency you can just turn the black knob and start bagging.
Check if your baby is getting enough humidification. Changes in weather can affect the heater.
Have your own stethoscope so you can listen to your baby’s breathing. Your nurse can help you listen to what you are supposed to hear plus there are some audio files on the web.
Ask your nurses how often they listen to your baby’s breath sounds.
Spot check in the early hours of the morning since this is the time that nurses sometimes get tired. Do this especially when it is your first time to be home from the hospital.
Have a “Go-bag” with medical essentials like: emergency numbers, ambu-bag, step down trache, trache ties, trache care kit, in line suction catheters, blunt scissors, water soluble lubricant, gloves, towel roll, bulb syringes, tissues, sterile saline, CPR barrier device.
The “Go-bag” is not a diaper bag. DO NOT keep emergency items in the diaper bag.
When going to a doctor’s appointment bring: “Go-bag”, diaper bag and portable suction.
Ask your day nurses to keep an eye on the medications if you are running low. You can ask them to call the pharmacy for a refill.
A great day nurse is someone who will interact with your baby and not just keep him in bed.
A great night nurse is someone who does not sleep! And who cleans the equipment during her shift.
Cleaning the equipment at night is part of the night nurses’ job. She needs to wipe the baby’s crib before the baby is in it and other equipment like concentrator, suction machine, oxygen tank, high chair, bouncer, walker, stander and toys that have been used during the day.
BE NICE TO YOUR NURSES! Nurses are professionals even though they work in our home. They are not nannies to our other children. A nurse that is treated nicely will make sure your shifts are covered.
Always ask for an update of your schedule from your nursing agency. Show them that you mean business so that they will ensure your hours are covered. Be firm.
It helps to have a dedicated pharmacy that refills the medicines. They are the ones who contact the doctor’s office if and when you need refills. They also call Medicaid and your insurance to clarify things.
Keep coffee, tea an other drinks in the house especially for night nurses. They will appreciate it.
Physical therapy, occupational therapy and speech therapy are priority appointments. They are second to doctor’s visits. Cancel only when necessary and ask if they can make-up the session. Most are willing to do so.
Talk to your therapist often so that you know how to do your part in helping your child progress developmentally.
Celebrate your baby’s success no matter how small. Progress is progress!
Play with your child. Human interaction is better than the screen!
Pray with your child at night and as much as possible be the last person your child sees before he/she goes to sleep.
Learn how to change the circuit and heater yourself with the assistance of your nurse. It’s a two person job. Do not do it alone!