Seeking night nurse to join #Teamellie
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.
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.
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.
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.
Today I got a call from the genetics department. Ellie has a diagnosis that explains all of her symptoms. The our test from the whole exome sequencing was re-run to compare our results with current findings and data. Jeff, Ellie's dad, and I both carry the the genetic material responsible for Ellie's genetic variance with the TTN gene. Limb-Girdle Muscular Dystrophy type 2J also known as Salih Myopathy is newly discovered since Ellie's birth. We'll learn more when we meet with the geneticist in October. If you want to read more there is some info from the National Organization for Rare Disorders (NORD).
For Ellie, having a diagnosis will be helpful. For example, we're more likely to have help from organizations such as the Muscular Dystrophy Association and may be elegible for assistance for various things because she has a diagnosis where as before because she didn't have an MDA diagnosis we weren't eligible for support. For science and research, this is good. We have a name and something searchable. There are others diagnosed so we can learn from them however this because it's extremely rare there is little information so far.
For me a diagnosis is overwhelming. I have so many feelings. Before a diagnosis I could pretend, and hope and dream that some day all these difficulties would all disappear. That Ellie would walk and breathe on her own and we wouldn't need all this extra equipment and that she could be independent. She still might do all these things but instead of dream, I can research and learn how this disease/disorder has affected others. A diagnosis makes it real. It's scary and right now, I'm afraid to know more. It's a lot me to digest and a major change for me as far as mindset. I'll remain hopeful and still work very hard to provide and do the best I can for Ellie. That won't change. For today, I need time to grieve. Tomorrow is a new day. #TeamEllie
Happy Birthday Ellie!
Today you’re two! I can’t believe it. I can’t believe it’s been two years since the most terrifyingly miserable week of my whole life. Your birthday is a difficult day for me to celebrate. You'll understand some day.
I love you more than you know and I’m so proud of all you’ve accomplished in your short life. You’re determined to prove your abilities. You’re happy. You bring us joy. You radiate happiness.
It’s hard for me to sort out my feelings on your birthday. I’m so happy to have you in my life. You have made me a better person, a better mom, a better dietitian, and a better wife. But when your birthday rolls around I have flashbacks and relive the darkest, most lonely moments of my life. I walked the hospital halls, unable to hold back tears. I’d walk back and forth between the NICU and my room in the Mother/Baby unit. I passed by rooms filled with happy stories. Rooms filled with healthy, normal babies. Rooms filled with visitors and joy. All-day-long. My room was dark and lonely.
I visited you multiple times per day between force-feeding myself each meal. Between each pump session I would deliver milk to the NICU for you. I’d check on you and hold your little hands. I couldn’t hold you without sobbing uncontrollably. Your prognosis was a mystery. I feared I would lose you. I feared I’d have to make a choice to let you go. In a way, I had lost you. I lost the child I had envisioned I’d have.
You were supposed to be able to take trips to the grocery store with me hitching a ride in a baby carrier. You were supposed to be able to ride in a stroller and go for walks in the neighborhood or hang out in your stroller in the backyard while your big brother played and I tended to the garden. You were supposed to be able to breathe on your own. You were supposed to be cordless. You were supposed to come home with me and cry for me in the night because you needed your mom. Instead I had to leave you with complete strangers every single night. I’d wake up too scared to call and check on you because I was too scared to hear bad news. Every night I was scared I’d get a phone call saying you had died.
It took months but I learned that you could come home and live with your family where you belong. I learned how to take care of you. I made sure I was as practiced as much as possible spending 17 hours per day 7 days per week in the hospital with you so when you came home, I could keep you safe. It was my job to keep you alive. Your breath was literally in my hands. I learned to squeeze the ambu bag. I was breathing for you. It’s an amazing thing yet so, so scary. What if I didn’t do it right? What if I forget how to do CPR? What if I panic and can’t think clearly in an emergency?
Ellie you are so strong. You teach me what true strength is. Some days I wonder how long I can keep up this lifestyle. How can I keep going? Where will I find the energy to keep up with the demands of your needs? How will I be a good enough mom to your brother who is constantly overshadowed by your needs?
There is a saying “it takes a village to raise a child”. Without my village I would be unable to provide for you. Without our village I wouldn’t be able to care for myself or your brother Nathan or your dad. Without our village I would be alone in this journey. But I’m not alone. We’re surrounded by the best friends, family, community, supporters, caretakers and more love than I knew existed. My heart feels like it will explode on a regular basis.
I am grateful.
Ellie you have taught me,
To be strong.
To love unconditionally.
To adjust my sails.
You are amazing little girl. I’m so lucky to have you in my life. Just please don’t be upset that your birthday makes me cry, likely every birthday will. Most tears are tears of joy. Tears because my heart is so full it’s raining gratefulness. Yes, there are a few tears of sadness and fear but mostly today I’m remembering our journey. Our journey through the storm. We have braved so much and I’m so proud of us. I’m so grateful you’re here. You're my shining light.
Happy birthday Ellie.
Courtney is Ellie's mom. She and her villiage have been raising Ellie (and her big brother Nathan) and learning how to live with and manage life around Ellie's physical disabilities and special needs. It's not easy but our villiage is amazing. Thank you to all of you who support us, love us, and provide hope, wishes and prayers.