How to Care for Ethan Chamberlain

Ethan was discharged from Seattle Children's hospital on Monday and 4 days later I was on a plane to see my best friend get married in Utah. Ethan was still on BiPAP, still had a feeding tube, and still had medications to administer but there were a lot of new things too. He was now on oxygen 24/7, he had a G-J tube not just a G-tube, and he had double the medications. I started training grandma and grandpa on how to take care of Ethan. I taught them how to pull up the meds in syringes, how to work the feeding pump, how to fill up the oxygen tanks, how to put Ethan on BiPAP, and so on. I assured them that everything would be ok because dad would be up here too but then I realized that Michael didn't know how to do the new stuff. Michael wasn't here when Ethan was discharged! I still wanted to go to my friend's wedding and I knew grandma, grandpa and Michael could do it so I typed up this 5 page document titled How to Care for Ethan. I guess that required technical writing class at BYU did come in handy. :) haha. 

How To Care For Ethan

Feeds

Breastmilk is only good for 4 hours at room temperature. Fresh milk is good for 5 days in the refrigerator, 6 months in the freezer, and up to 1 year in the deep freezer. Frozen milk should be used within 24 hours after it is defrosted. It is important to measure out breastmilk before warming to limit waste. Kangaroo bags are replaced every morning. Ethan’s daily target volume is 1,080 mL of breastmilk (not fortified). Stop feeds if throwing up.

*Wash hands thoroughly*

Step 1: Warm breastmilk to room temperature or just above room temperature.

Step 2: Check bag for residue milk. Either pump residue milk out by priming pump or pour warm water into bag and flush out by pressing the prime pump button.

Step 3: Pour milk into empty bag.

Step 4: Prime pump until no air is in the line. Press Done.

Step 5: Set feed rate to 60 mL/hour. (Adjust settings. Feed Rate.) Press Done.

Step 6: Connect line to J-Tube (red port)

Step 7: Press Run to start feeds.

Step 8: Follow feeding schedule below.

Step 9: Turn off pump by holding power button for 3 seconds.

Step 10: Unplug from J-Tube.

Step 11: Charge pump at night

Time	Feeds
9 am	Stop feed for 2 hours - morning meds
11 am	Start feed for 4 hours (240 mL) + Sodium Chloride (1.75mL)
3 pm	Stop feed for 2 hours - afternoon meds
5 pm	Start feed for 4 hours (240 mL) + Sodium Chloride (1.75mL)
9 pm	Stop feed for 2 hours - evening meds
11 pm	Start feed 10 hours (240 mL) + Sodium Chloride (1.75mL)
3 am	Add new breastmilk (240 mL)
7 am	Add new breastmilk (120 mL)

Using Kangaroo Pump:

1. Turn on - press power button
2. Keep settings vs. clear settings - press keep settings most of the time to keep the total volume delivered. If it’s the first feed of a new day press clear settings and the total volume starts over. Total volume over 24 hours should be 1,080 mL. Record volume if short of the target more than 30 mL.
3. Prime pump:
1. Auto prime - primes the pump most of the way but you will need to hold to prime the rest of the way
2. Hold to prime feed - hold to prime milk to the tip
3. Done
4. Adjust settings
1. Feed rate - 60 mL/hr
2. Feed VTBD (volume to be delivered) - not needed but can set. Each time you turn off the pump it resets to the original volume you entered.
3. Done
5. Run - starts the feed
6. Hold - pauses the feed
7. Turn off - hold power button for 3 seconds

Troubleshooting:

• Hold Error:
• Continue - stops alarm and returns to the home screen.  MUST PRESS RUN to start feed. This does NOT automatically start feed.
• Power down
• Feed Error: Bag empty, clog in line, valve not loaded
• Continue - this automatically starts feed again.
• Power down - power down if bag is empty

Medications

Ethan likes to throw up his meds. Pay attention to: meds given, time of meds, time of throwing up/how soon after meds, color of throwup, amount of throw up, length of gagging/throwing up, etc. Give meds slowly. If he throws up during the day (Mon-Friday) call the Heart Center at 206-987-2015. If he throws up during the night (or weekend) call 206-987-2000 and ask the receptionist for the cardiologist on call. Rule of thumb: if he throws up an important heart med right after giving it you will probably have to redose those meds. If he throws up after 15 minutes of giving the med you may not need to do anything. Still call the doctor though!

Step 1: Prepare a clean surface for medication preparation

Step 2: Wash hands thoroughly with proper handwashing technique

Step 3: Draw up each med into syringe using pumping technique to limit air bubbles

Step 4: Watch the clock and mentally record when you give each med

Step 5: Rinse and pump each syringe with warm water. Add mild soap if necessary. Dry.

Step 6: Follow med schedule below through G-tube (med port)

Step 7: Flush with 3 mL of water from tap.

Morning Meds

Time	Medication	Instruction
8:30 am	Omeprazole (3.5 mL)	Fridge, shake well
9:00 am	Digoxin (0.3 mL) Epaned (1 mL) Carvedilol (1 mL)	Shake well
9:15 am	HydrALAZINE (1 tablet) Isosorbide Dinitrate (1 tablet) Aspirin (½ tablet) *Breastmilk ~2 mL* Spironolactone (1.5 mL)	Crush tablets together and draw up with 3-5 mL of warm water. Flush immediately with breastmilk. Fridge, shake well, take with food
9:30 am	Furosemide (1.3 mL) Sildenafil (5.6 mL)	Avoid excessive sun exposure Shake well
9:45 am	*Breastmilk ~2 mL* Ferrous Sulfate (1 mL) *Breastmilk ~2 mL* Poly-Vi-Sol (1 mL) *Breastmilk ~1 mL* Water flush (~3 mL)	Take with food/immediately after food Shake well
11:00 am	Sodium Chloride (1.75 mL)	Fridge, mix with feed through J-Tube

Afternoon Meds

Time	Medication	Instruction
3:00 pm	HydrALAZINE (1 tablet) Isosorbide Dinitrate (1 tablet) *Breastmilk ~2 mL*	Crush tablets together and draw up with 3-5 mL of warm water. Flush immediately with breastmilk.
3:05 pm	Sildenafil (5.6 mL) Water flush ~3mL	Shake well
5:00 pm	Sodium Chloride (1.75 mL)	Fridge, mix with feed through J-Tube

Evening Meds

Time	Medication	Instruction
8:30 pm	Omeprazole (3.5 mL)	Fridge, shake well
9:00 pm	Digoxin (0.3 mL) Epaned (1 mL) Carvedilol (1 mL)	Shake well
9:15 pm	HydrALAZINE (1 tablet) Isosorbide Dinitrate (1 tablet) *Breastmilk ~2 mL* Spironolactone (1.5 mL)	Crush tablets together and draw up with 3-5 mL of warm water. Flush immediately with breastmilk. Fridge, shake well, take with food
9:30 pm	Furosemide (1.3 mL) Sildenafil (5.6 mL)	Avoid excessive sun exposure Shake well
9:45 pm	*Breastmilk ~2 mL* Ferrous Sulfate (1 mL) *Breastmilk ~1 mL* Cyproheptadine (5 mL) Water flush (~3 mL)	Take with food/immediately after food
11:00 pm	Sodium Chloride (1.75 mL)	Fridge, mix with feed through J-Tube

Helmet

Wear helmet for 23 hours each day. Take helmet off for 1 hour each day. During that hour perform a skin check. Remove the band and call the orthotist (206-987-8448) right away if there is an area of deep redness that does not fade in one hour after removing the band, if there is any skin breakdown, or if a rash develops. Remove the helmet if Ethan has a fever or the flu. Clean the helmet during the 1 hour off period by vigorously rub the inside of the helmet with rubbing alcohol and a washcloth. Set the helmet upside down to dry. Keep helmet away from pets.

Work of Breathing

The following indicates an increase in work of breathing: Rapid breaths per minute (60 and above), retractions below the rib cage, retractions in between the rib cage, nostril flairing, grunting with breaths.

Routine

Morning Time

• Place a full portable oxygen tank into carry case.
• Turn on portable oxygen tank to 0.25 L/min and plug in nasal cannula
• Remove BiPAP mask
• Replace sticky dots if necessary. You may need to remove helmet to do this.
• Put on nasal cannula and secure with dots
• Turn off BiPAP machine AND humidifier
• Turn off concentrator
• Prepare for a blowout if he hasn’t done so yet. :)
• 9 am Morning meds (see medication section)
• Replace Kangaroo pump bag
• 11 am Morning feeds (see feeding section)

Day Time

• Nap somewhere between 11am - 1pm
• 3 pm Afternoon meds (see medication section)
• Try feeding him solids
• Nap somewhere between 3pm - 5pm

Night Time

• 7 pm Bath time:
• Remove helmet and scrub inside vigorously with rubbing alcohol
• Check head for redness, rash or any skin break down
• If redness does not fade within 1 hour or there is breakdown, call orthotics
• Give bath
• Clean G-J tube site with a wet q-tip rubbing back and forth along the surface and under the T bar
• Dry and dress *be sure nasal cannula is outside of clothes for ease of BiPAP
• Replace H-tape if necessary
• Replace helmet after 1 hour. Be sure both helmet and hair is dry before.
• 8:30 pm Bedtime
• 9 pm Evening meds (see medication section)
• 11 pm BiPAP: (or after Ethan has been asleep for at least 30 min and evening meds)
• Turn on concentrator (2 L/min O2)
• Turn on BiPAP machine, silence alarm, and turn on humidifier *Check water*
• Remove nasal cannula
• Put on BiPAP mask and plug in tubing *leak should be between 25-35*
• Turn off portable oxygen tank and plug into concentrator
• Refill oxygen tank
• 11 pm PulseOx:
• Check at least once on BiPAP during the night
• Hold power button to turn on
• Wrap tape around toe
• Record O2 % and BPM
• Remove tape and turn off machine
• Spot check with PulseOx anytime you think something might be wrong
• 11 pm Evening feed (see feeding section)
• Charge Kangaroo pump