A day in the life of Ellie

Abridged edition:

0800 Mom just came downstairs. She's saying goodbye to the nurse and finally getting me out of the crib! Time to eat. We can finally take my annoying splints off of my hands and feet. Oh, all this moving around has shaken up some secretions.. time to suction me!

0830 Mom is removing the dressing from my trach and cleaning around my stoma. I don't like it when she rubs the q-tip around when she is cleaning. I think I will cough and interrupt her so that she has to suction me again. Maybe I will poop too to put off the torture of the trach care.

0900 I'm resting on daddy's lap and he is exercising my arms and legs. When he works on my ankles I start to get upset.

0930 I'm relaxing in my comfy chair and my brothers are throwing cars at each other. It's quite entertaining until Seth starts crying and mommy has to go make him feel better. I think I will cough again so that daddy will come suction me and sit next to me.

1030 I'm starting to get hungry. I can see mommy sitting in her chair pumping some fresh milk for me. Even though I can't taste it, I know mommy's milk is what is making me get stronger and feel better.

1100 Finally daddy is pouring the milk into my feeding tube. I'm starting to feel sleepy....Oh yeah I am hoping mom and dad will forget about my ankle splints; these need to be put on until 1700.

1300 My breathing is feeling a little raspy and I'm starting to cough. Daddy quickly suctions my trach and also does my mouth while he is at it. Much better!

1400 Time to eat again!

1500 Mom throws me in the sling and starts to clean all the supplies that have been used in the last 24 hours. It is nice to have a change of scenery, even though it is the kitchen sink. I may have all these wires pulling on me, but it sure is nice being close to mom.

1600 Noah is kissing me and touching my face. Dad is yelling at him, asking him if he cleaned his hands. Noah keeps repeating, "Good morning Ellie.... Good morning Ellie," as he peels my eyes open. Doesn't he know I need my sleep? I am a growing baby!

1700 Mom just got done pumping again and I have been awake a little while trying to tell her I am hungry. Since I can't talk, I cough, turn my face red, and hyper-extend my neck....It's the best I can for now. Oh, and more suction of course! My ankle splints are off now too.

1800 Mom and dad are cleaning my suction equipment while I contemplate the beauty of the wood grain of my crib. Dad is cleaning out the fluid canister for my suction machine, while mom is making fresh acetate solution for my suction catheters to be stored in. While mom and dad are in the kitchen, Noah sticks his hand in my crib to touch my face again.

1900 I am on dad's lap again doing physical exercise. Dad is also massaging my face and tongue; some day I hope that I will eat food through my mouth.

1930 I need my trach and G-tube site cleaned, and fresh trach ties and dressings put on around my incisions (aka stoma). I don't like getting poked with q-tips, I make sure to let me know by turning my face fire engine red.

2000 I am hungry again and mom is feeding me through my G-tube. Whoops Mom spilled the milk out of the syringe again. No worry, at this point, Mom has stored up so much milk in our freezer and deepfreeze that we have contracted for off-site storage (aka Grandma and Grandpa's house). Oh no!Daddy has my ankle and wrist splints in his hands! I try to punch and kick him, but he always manages to get them on. I guess they are good for me, especially if it keeps me from having surgeries later on down the road.

2100 Dad turns on my humidification collar and places it over my trach. I will wear this all night so that the secretions in my trachea do not get too thick and plug my trach. It is actually really annoying, the mist is so profuse that my clothes, neck, and trach dressing get all wet. But it sure beats an emergency trach change.

2200 The nurse, who will watch me while I sleep, arrives at our house. Dad explains everything about my care, supplies, and equipment. The nurse does an initial assessment of my vitals.

2300 I am fed again, suctioned, and dad and mom go up to bed.


My humble abode


A portion of my supplies


My feeding "button" (and comfy cloth diaper)


My trach (and cute cheeks)