Back in the PICU

Elie, Mari and Cheez-it.

Monday morning Elie went unresponsive and stopped breathing – her heart rate dropping to around 20 BPM. Nurse Agnes and Mari were able to successfully administer extra oxygen and rescue breaths so that by the time the paramedics arrived, Elie was breathing on her own again. Following a short ride to the hospital she was admitted back to the PICU, under the excellent care of many of the same CHOA doctors and nurses that looked after Elie following her G-tube surgery a few weeks ago.

We will likely be here a while. Despite our best efforts (increased frequency of cough assist and albuterol), the atelectasis in her right lung has gotten worse and is also now affecting her left lung. Her respiration rate is slowing and she requires more oxygen to keep her saturation levels up. Her daily naps are increasing in both frequency and duration. She often breaks into cold sweats and her cries are growing weaker. As our pulmonologist put it to us last week, she’s running a marathon every day.

We’re continuing to work with our GI docs to come up with a better plan to address her nutrition. The respiratory therapy is pushing air into her stomach as well as her lungs, leading to the bloating and discomfort that results in her vomiting.

While Elie is often anxious she doesn’t appear to be in any significant amount of pain. In between all her evaluations and treatments we’ve been reading to her, playing music and watching videos. Cousin Erin is visiting with us as I write this and we’re expecting Uncle Rob to stop by later this evening.

Thanks as always for keeping us in your thoughts.

 

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Categories: Uncategorized | 27 Comments

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27 thoughts on “Back in the PICU

  1. Dana McMurry

    I know everyone (even people you don’t know) think about you guys constantly and they are all sending you lots of love. You both are such strong wonderful parents. I am amazed. Hang in there and let me know when I can come and visit. XO. Aunt Dana

  2. Sara

    We love you guys! Please let us know if we can do anything…sound machine, food, etc.

  3. Which hospital are you in Elie? Mama Love and Jesica want to send you something. We love you and your mommy and daddy.

    • Darin

      Thanks Mama Love! We’re in the Egleston PICU, just 2 miles from home. Unfortunately, they don’t allow any outside food, flowers – or even latex balloons. But lucky for us they do have a library full of children’s books and DVDs. Thanks again for thinking of us.

  4. aunt dana said it perfectly. the engle fam is held close to so many hearts. sending lots of love your way!

  5. Chris Creagh

    We want you to know that we are thinking of all of you from afar often and continue to send good thoughts and prayers your way. Your strength is contagious. Let us know if there is anything we can do. The Phu Taus would love to help raise funds or other things to help out if there is something you need. Please let me know.

    Love,
    Chris & Jennifer.

  6. Jo

    Even though I am on another continent there is not one moment of my days that I do not think about you guys, and with it I send you my love and prays…I can only reiterate the previous comments-you are amazing parents just keep doing what you are doing, I only wish I could do more than send my prays to you all xxx

  7. Jodie Brooks

    Thinking about you ALL every day! Sending tons of prayers your way for healing and comfort. Please kiss that precious baby’s cheeks for me!! So irresistible!!

  8. Polly Fabry

    Sending thoughts, prayers and lots of hugs to sweet baby Elie and family. And anything else you might need to make your hospital stay more comfortable… just let me know.

  9. Karen Hoffmeier

    Many prayers for all of you and her many caregivers. Thanks for the updates and the wonderful pictures.

  10. Lots of thoughts and prayers for Beautiful Baby Ellie and all the family from the whole Smith family in VA & SC.

  11. Colleen Hartman

    I am Kelley Engles aunt. I have been praying for Eli and her parents since learning of her health issues. My prayers are that there will be no pain for Eli and that God will give her parents strength to care for her needs. Blessings to all of you.

  12. hugs to you all, hope they can help Eliebean out.

  13. Our thoughts and prayers are with you all every day. The road can be rough but you have a lot of people praying for Elie and here to support/ help you in anyway that we can. I love seeing new pictures of her; she looks so much like my daughter đŸ™‚

  14. Tara

    We are thinking about you every day. What a strong little girl you have raised!

  15. tomtomaka

    Our love and best wishes go out to all three of you.

  16. Jenn

    Thinking of you constantly. Please let me know how I can help. I’m happy to bring by any supplies you guys need, or check on your kitties at home (or even bring them to my house for a while if you need). Love and strength to the three of you.

  17. Nonnie

    My precious children, Darin and Mari. I stand in awe of the love you have for each other and for Elie. You have filled her life with strength and joy. That love is so evident in her precious eyes when she speaks to each of us. I love you each with all my heart.

  18. Hey Guys! It was great to see you all yesterday :). I hope Elie had a good night and things go well today too with X-rays & her new tube. Call me if you have any questions…I’ll try to answer them! (Haha, respiratory expect though I am not)

    Ps. Shannon thinks he did better on his calc test than last time. Thanks for the “good luck”

  19. Amy

    We are sending you all so much love and strength. Despite tubes and wires and bleeping machines, its wonderful to see (in this pic) that Elie and Marietta are still able to be in each others arms.

  20. Diane

    Thoughts and prayers are going up for Elie and her wonderful, awesome parents and the wonderful doctors, nurses, and staff at CHOA. Please let me know if you need anything.

  21. Sherri

    Just wanted to let you know how much you are in our thoughts. We have followed Elie’s story through the blog and admire all of the love and care you have put into it. We hope you know that we are here for you in whatever way you need.

  22. Wendy

    I’m sorry she is having such troubles – I know she is in the best hands though, as her mommy and daddy are with her. I am thinking about you all and praying. I hope you are able to still have a birthday party tomorrow – the big 6! Love to you all.

  23. Elizabeth

    Mari and Darin- I love you both and Colin and I are thinking about you today. Hugs!

  24. Joann

    My thoughts and prayers are going out to such great parents and Eliebean.

  25. rebeccalehmanperez

    Your message is painful to hear. Your Elie is so lovely and smart; I am so sad to hear that she has to go through a marathon each day. Our love and our thoughts are with you three.

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