An update from Deb…

Deb here, Step-mom to Ella, wife to Glen, and friend to Alycia (Ella’s mom).  It’s been weeks since I have written a blog, but with the recent changes, I feel now is the time to share my experience.

It’s been just over a week since Ella was transferred to UCSF.  Ella is out of the PICU, and is now in a private room.  When Ella was in the PICU, we were able to stay bedside for as long as we wanted, but were able to leave at night to get rest (at least one parent always stayed in town, within a 10 minute drive) .  From 7am to sometimes 10pm we would sit and watch the nurses take care of Ella, we all wanted to help more than we were allowed.

Now that Ella is in her private room at UCSF, one parent is required to stay at all times and we are more involved.  With my work schedule I have only visited Ella a few times since her move, but what I want to share with you is the experience I had while I was ‘on duty’ for my 24 hour parent shift.

Before I begin, let me first THANK Alycia for being the best mom, and caring for Ella so much that we literally have to force her out of the hospital to go get a much needed break.

This past Sunday I arrived at 1pm.  Alycia stayed with me an hour or so and showed me the ropes.  She informed me that it’s so busy that it’s not until around 11pm that she has been able to really lay down and relax.  I said, No problem (but secretly thought, 11pm? hmm?). I now know she wasn’t kidding.

With the private room, Ella has one nurse and one nurses assistant, and at least one of them comes by hourly.  We are now ‘hands on’ helping Ella with everything; which is great, yet exhausting.

Every two hours Ella gets turned, from the left side, to her right side to her back.  That may sound easy, but keep in mind you need to make sure her shoulders are square and her elbows are at a good angle (since she has been laying for over 2 months she has little muscle tone, her arms are very weak), her trach isn’t pressing against her chin or chest (which her initial wounds from surgery are still healing), the sheets aren’t wrinkled (so she doesn’t get sores on her skin), and just when you think she looks comfortable, you need to move the angle of the bed up to somewhere between 30-40 degrees so she can ‘sit up’.   Since she is not awake, she starts to slouch down in the bed after an hour, and needs to be repositioned.

Also, Ella is wearing special boots to help prevent ‘foot drop’.  These fuzzy boots get strapped on each foot for two hours to help keep her foot/ankle at a 90 degree angle.  Her legs hold a lot of tension and sometimes its a challenge to move her ankles to put her feet in the boots.  The boots come off after 2 hours, and then we put on her SCDs (leg compression pads), which help prevent blood clots.  Those stay on only for an hour because they start leaving marks on Ella’s legs.   Then she has one ‘off hour’ to allow her skin to breathe.  So… boots for 2 hours, pads for 1, and then a one hour break.

Of course this may sound easy, but keep in mind her bodily functions are still working, so she needs to be changed frequently too, and of course she waits until she is comfortable before wetting her diaper (probably a game she is playing, just to mess with us parents)

And, oral care  (Which I’m a bad step-mom, and forgot the oral care).  Alright, I’m not a bad step-mom, but I’ll never make that mistake again.  But when Glen or Alycia are ‘on duty’ they ‘brush’ Ella’s teeth and gums approx 4 times a day.  She gets bathed about once a day, and her face washed with a soft sterile cloth and sterile water a few times a day.  We have organic lip balm to keep her lips looking luscious, and she has the cutest lips.

Ella is still ‘hooked up’ to a few machines.  She is breathing room air through her trach, but does have humidified air coming through the trach collar to keep her from getting too dry.  She is being fed and receiving her meds through her G-tube (which is very delicate and is still healing and is actually a hole going right into her stomach, with a plastic button on the outside that snaps shut).  Machines are consistently reading her heart rate and her oxygen saturation levels and display all this on a monitor next to her bed.  She has her blood pressure & temperature taken every 4 hours.

Twice a day a respiratory therapist comes in with the respiratory shaking vest, which stays on for 20 minutes each time.  After carefully putting on this vest, protecting her g-tube, this vest inflates and shakes to help loosen secretion from her airways.  Ella normally coughs up secretions dozens of times a day, and when the respiratory therapist is not there, we help ‘suction’ some of the mucus that is coming out of the trach.  Sometimes it’s bloody mucus, because the trach is a hole in her throat.

It feels good to actually help Ella, rather than sit by and just watch, powerless.  The best part of my Sunday was when I pulled up the chair and told Ella it was story time.  I started page one of ‘The Little’s Halloween Scare’ and as I looked up to turn to page 2, I saw Ella had opened her eyes, wide, and kept them open for the entire story.  When the story was finished, she shut them.  We got busy with moving her, changing her boots, etc – but a few hours later I read Ella 3 more books, which she kept her eyes open the entire time.

Alycia was right, it was 11pm when I finally pulled out the bed and made my sleeping area {I told Ella we were having a slumber party}

Monday through Friday Ella has sessions with physical therapists, which will start to become more vigorous soon.  And  visits from teams of doctors.  Ella has also started her radiation treatment.  The first day was a bit emotional for Glen, Alycia and I, but leaning on each-other and recognizing this is the next step in Ella’s recovery, we dried our tears and stayed strong.

Glen & Alycia, Thank you to you both for allowing me to be a part of Ella’s life, and trusting me for the past 4 years to help care for Ella and influence her.  In sickness and in health, if more parents were as dedicated to their children as much as each of you, the world would be a better place.

I miss Ella more than I show, I am trying to stay strong.