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It's hard to believe Ellie is 3-years-old already. It's hard to believe we've been living life with a mini emergency room that travels with Ellie everywhere she goes including from room-to-room in the house and to the backyard to play for almost 3 years. It's hard to believe we've given up privacy and quiet family time to welcome help and nurses into our home and our family for 3 years.

To be honest, I wasn't looking foward to this day. I was afraid of dealing with my mind swirling with the excruciatingly painful images and emotions of Ellie's first day and week of life. It was a really dark place for me. I was afraid too because I recently went off my anti anxiety/anti depressant medication that I was prescribed in the first week of Ellie's life for "situational depression". I wasn't sure I'd be able to handle today without it. I'm happy to say, today has actually been okay. I think the happy memories and experiences finally outweigh the sad. We've had so much to celebrate and so many little milestones that it's almost hard to believe Ellie was as fragile as she was.

Our family accomplishments with Ellie as a 2-year-old

Ellie saw her first theater performance. Pete The Cat at the State Theater.
Ellie flew a kite.
Ellie started outpatient Physical Therapy.
We visited a butterfly exhibit at the Natural History Museum.
We played laser tag as a family for Aunt Kristen's birthday and Ellie had a blast.
We moved Ellie into her bedroom and out of the living room. This was a BIG step!
I (Courtney) took 3 work trips and flew on an airplane out of state. Two of those trips were for 5 nights away.
Ellie went swimming at recreational therapy.
Ellie jumped on the trampoline that we got for our indoor porch. With help of course.
Aunt Courtney survived taking Nathan ans his two cousins to the store by herself.
We went to Top of the Park and Ellie tried cotton candy and caught a firefly.
Ellie started speech therapy outpatient.
We successfully had a blend made for Ellie at the mall. The sushi place made her a blend from rice and a smoothie we purchased. They were awesome.
I took Ellie down the rolly slide... ouch. She loved it.
Ellie went grocery shopping with us several times. She's a shopaholic.
We got to be part of Shop With A Cop and it was an awesome experience.
Ellie started driving.
Ellie had her first teeth cleaning (a mini version).
Ellie started the process of weaning off the ventilator and can go up to an hour without her ventilator on a good day.
Ellie jumped in a bounce house at her Great Grandma's birthday celebration.
Ellie had 3 hospital admissions and terrified her parents. She got a blood transfusion (PSA: DONATE BLOOD).
Ellie started preschool. She LOVES it and wants to go everyday.
Nathan and Jeff went tree climbing.
We took Ellie on her first bike ride. She LOVES going fast!
Ellie was a chicken and Nathan was a Zhu Zhu pet for Halloween.
Ellie overcame her fear of bubbles.
Ellie's Grandpa Doug learned how to do most of Ellie's care and spent many hours caring for her solo.
Ellie's dad, Jeff, too care of her without me during an entire week-long hospital stay because I was also home sick and couldn't visit. Nice work Jeff!
Ellie went sledding.
Nathan did Ellie's hair.
Santa visited.
We finished the year with a homemade pasta making party with the cousins. Eli and Oliver had a sleepover.

3-year-old Ellie is going to accomplish so much more!

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Night nurse needed: Part-time RN or LPN

1/12/2018

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Seeking night nurse to join #Teamellie (Edit: ANY SHIFT)

UPDATE FEB. 29TH, 2018: ALL SHIFTS NEEDED! Additional hours available through the end of May beyond the schedule posted above.

Seeking reliable, kind-hearted, night-owl nurses to work with our super cool (yes we're biased) almost-3-year-old. We are highly involved parents who have managed every aspect of our daughter's care for her entire life. We're looking for nurses who are ready to learn her regimen and maintain high quality care.

Responsibilities include:

Supervising Ellie while she sleeps and managing her night-time regimen, which includes administering medications, managing respiratory care, managing trach care and gtube feeds, etc.
Achieveing proficiency in using her cough-assist machine and shaker vest.
Being comfortable suctioning her trach and determining when she needs suctioning.
Communicating kindly and effectively with the whole team which, besides the nursing agency, includes: parents, nurses and Ellie's older brother, Nathan.

We are willing to provide training to nurses willing to learn.

Our nurses are like family to us. We promise to treat you kindly and with respect. We also understand you probably also have a family so we try to be as flexible as possible with your scheduling needs.

We will be screening candidates, but if selected you will need to coordinate employment with the agency we use. The job (our home) is in Washtenaw County, MI.

Please email Courtney (Ellie's mom) at cstinsonrd@gmail.com

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Trach Suctioning & Infection Control

1/9/2018

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Keeping Ellie's suctioning supplies clean is imperative. Without a streamlined system to keep our supplies clean and a good schedule for replacing catheters, Ellie's risk for infection would be much higher. Below I'm detailing what supplies we use, where to buy them and how to keep everything clean and rotated.

Supplies

Your Durable Medical Equipment (DME) provider should regularly send you:

Suction catheters to suction the trach
Some kind of oral/nasal suction - we have Neo Suckers
Trach tube

Supplies you'll likely have to supply:

Vinegar - gallon jugs
Electric kettle for water only
Dishwashing tub (the ugly pink multi-use tubs from the hospital work great) for washing supplies separate from other stuff or dishes in your house
Canning jars:
- 1 quart size, wide mouth jar
- 2 pint size, small mouth jars
- 1 short profile, wide mouth 250 ml jar
Plastic canning jar lids with a hole drilled in each lid. You can drill your own or just buy pre-drilled lids.
Sharpie oil-based paint marker for marking lids to prevent contaminating clean jars with dirty suction catheters

Throughout the day

After suctioning Ellie, this is how we clean the suction catheter and neo sucker.

Dip entire length of suction catheter up to thumb plug thingy (real technical I know) and suck up some 1/4 strength vinegar from jar #1.
Dip entire length of suction catheter up to thumb plug and suck up boiled water from jar #2.
Store rinsed, clean suction catheter in jar #3.

To rinse and store the nose suctioner (getting real techincal again) suck up water from the short jar labeled "nose" or "neo", disconnect suction tube from nose sucker and suction catheter between suctioning so contents from tube don't drip down into clean suction catheters.

Daily

Wash and sanitize jars and lids
Replace nasal suctioner (neo sucker) and suction catheter

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Tips

We like to color code our jars and lids and keep them different sizes to help avoid confusion. In the heat of the moment during an emergency you want everything organized and labeled as clearly as possible. We like to use the color green for the "dirty" jars/lids and purple for "clean". By using a shorter jar for nose suction, it helps avoid confusion so you know the nose sucker always goes in the short jar.

Our goal is to change out the jars and suction catheter twice daily. Once daily is the recommendation we were trained on but you can't be too clean with this stuff! We put the jars and lids in the dishwasher when we run our dishwasher at night and we make sure to run a sanitize cycle. We let the jars and lids air dry and then store them in a clean, dry cupboard until we need them. It's good to have at least 3 sets of jars/lids to rotate, two in the dishwasher and one in use each day.