Friday, September 10, 2010

September 10: Day +70


Remember the phone call story?

Got another one! I swear.

It's 3:30 in the morning, and the room phone rings. I launch into the air and answer the phone as my heart rate explodes and adrenaline rockets into high gear.

The last instructions I left the night nurse were:

1) If she had to call, call the room phone
2) Don't call.

She followed the first part at least.

The reason for the call?

The Prisma circuit had a malfunction and shut itself down.

That was it.

Nothing for me to do about that. I told her she gave me a hard attack. She apologized; she thought I would want to know.

Today, we politely let the staff know that it is not necessary to call us if and when Prisma crashes.

Moving right along. It was actually a really good day for Bella in several ways:

1) Her new head gear stayed nicely and did not cause any collateral damage
2) Despite being off Prisma for nearly 6 hours, they were able to pull off all but 90 mL of fluid for the day!
3) This meant that Bella's not leaking out her vasculature, because her blood pressure held all day and night.
4) We did a pressure support trial again and Bella did great.

Now for the bad news:

Sam came in and had "the talk" with me today about extubation and the tracheotomy. Basically, it went something like this:

"Her tracheotomy is scheduled for Thursday unless fluid magically starts flying off her over the next 48 hours. There's no way she's ready to be extubated Monday. There is simply way too much fluid; it takes way too much pressure from the vent to adequately open her lungs. She's gonna poop out from 70 days of atrophy and we'll end up having to re-intubate her. We waited a week, but we need to wake her up, and we need to take that tube out of her throat. We don't know what her airway is going to look like when we take out the tube (respiratory therapy is pulling blood out of her airway currently). It may be way too scarred and we may need a trach anyway."

That was pretty tough to hear.

I know it's his job to give it straight, and as much as he wants to see an easier way, he doesn't see one. To him, a trach is not a big deal if it means Bella gets better. We understand the logic, but he's not the one who will have the problem of caring for a trach in a kid who is so fluid overloaded you can't even see her throat. Her skin is literally bursting and peeling off right now due to the fluid excess. There is no room for a plastic apparatus sticking out of her throat. I genuinely have no idea how they plan to secure it safely without causing damage to her neck, and how we're gonna clean and care for it while also rolling her onto her side to care for her ulcer every day. Ugh. Sorry if I sound like I'm whining or complaining, but it somehow feels like if Bella ends up with a trach, we somehow let her down. I don't know. Spend 68 days in an ICU and try to retain your sanity, clarity of thought, composure, and ability to be flexible. The overarching grief at this point has become constant and increasingly painful. When we are thinking and operating tactically moment by moment, day by day, I can still function. But when I remember my daughter Bella, the pain is crushing. To have gone into this looking so good on paper and so good clinically, and to be where we are at this point, so far off the road we envisioned, it's easy to feel completely lost.

Even though I believe that God has a plan and that this is all part of it, it doesn't stop me from feeling this pain.

Despite all that, I can still feel pain and be grateful. For what?

1) Bella is still alive, and frankly, I don't sense that her life is in danger if we continue to manage her kidney failure as we are, and support her blood pressure as we are.

2) We are able to be here as a family.

3) Angelique has a job that allows her to work from home.

4) We don't drive a car except on the weekends, which means a lot more quality time together.

5) Ang and I walk Ali home from school every day.

6) We have more offers for home cooked meals and BBQs than days in a weekend.

7) Not a week goes by without cards and gifts showering us.

8) We have absolute amazing tenants living in our condo back home.

9) Angelique's income and benefits allow me to devote all my time and energy into being Bella's primary caregiver.

10) My internship and work in several hospitals prior to coming here has prepared me to feel at home in the hospital and unintimidated by ANYONE in it.

11) We have 9 meals a week prepared for us by hundreds and hundreds of well-meaning, generous volunteers.

12) We get to live in a 900 sq ft furnished apartment 2 blocks from the hospital and 2 blocks from Ali's school for $750 a month, all of which is reimbursable through our insurance.

13) There are 5 kids with EB here on 5D and C right now.

14) 800+ people from 40+ countries are reading this gratitude list today.

15) You are one of those people.

In all our lives, there are constantly two lists: things that bring us down, and things that lift us up. The question is not which one is bigger. The question is which one are you paying more attention to?

God night.

Ali attacking me with a frozen bag o' broccoli...


  1. Those middle of the night phone calls must be awful! I'm a NICU nurse, and we always tell the parents that if the phone's ringing in the middle of the night and it's the hospital - odds are it's not good.

    Tripp's Mama should have some great trach care tips for you. Premies who end up needing a trach also seem to have like no necks. There are all sorts of adapters out there that can help elongate the part of the trach that sticks out.

    Check out this blog as well for trach tips:
    I know they have had to get some custom stuff made so her trach wouldn't get squished in her neck.

    I'm not entirely sure how I got hooked on all of these medical / sick blogs. My cousin adopted from Ethiopia (twice!), and I guess I just started clicking on links for other blogs along the way. However, there has not been a blog that I have checked every single night for the daily update like I have done with yours for Bella's. Even if I'm at work (saving tiny babies!!!), I still try to read the nightly post there. If not, then Bella's is the first that check up on when I get home in the morning.

    As I've been reading more and more EB blogs (Jonah, Tripp, you, Daylon....) I have come to realize that my NICU unit has no idea what so ever to do when we get an EB kid. I took care of one a few years ago, but he was born at 24 weeks gestation, and had just about everything else wrong with him that could possibly happen. I remember that we had no clue what to do for him EB wise. We knew that we had to pop the blisters, but that was about it.

    One of my goals at work this year is to get together a resource packet for our staff for if and when we do get another EB kid. This way, we will all be prepared from the start.

    And that idea came from you, and all of the other EB blogs out there. Thanks for giving me the tools I have needed to get going on this project.

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  3. tim and angie, james and i just recently got to catch up on your blog, and saw the CHOC walk (we REALLY REALLY wanted to do it but we have something we absolutely can't get out of that day)... but please know that we think of your family and pray for your family... we are so sorry that you deal with this struggle daily but we are so inspired by your faith, hope, and dedication to doing everything it takes to do what you can for bella.

    love, kristen and james

  4. "Be still and know that I am God"-He will continue to carry you all through this and feed you with necessary wisdom. Preserving your daughter's wellness, is a high task, but God will keep showing you how to do that--even if that means wound care for the trach. Just trust that He is fully able.

    You are soo courageous . . . although the stress, time, and pain you've all endured just in the hospital it supersized, God is bigger, and He will prove faithful everyday. If you can, try and not look back . . . it is so easy to slip to comparing (and you're trained for that) . . .but also in the 'here and now'--it's ok to feel all you feel. But you are Bella's life line here on earth, and God is still using you.

    As for the trach--I could only imagine how I would feel--at this point, trust that she could heal from that too, and if the doctor's suggest it to move her forward in her healing process, then try and be courageous . . . just try and think ahead (not behind) of the things (maybe a small handful) you might be able to experience, and Bella experience, by being off the breathing tube. Maybe she could sit up? Maybe be more awake, and responsive etc, and of course maybe heal faster . . . only God will give you that, and with the doctor's ideas.

    Hang in there! Today's a gift. Sending much love and positive thoughts, and prayers everyday. You guys are all amazing.

    You have tremendous faith in God, in hope, and in life. God will honor all of your efforts. Meanwhile, just love on your family and 'be'-whatever and however that is for the moment . . .

  5. I loved your "I'm grateful for" list. It's awesome. I love how you guys are always so optimistic. You bring me up everyday when I read your blog. I'm addicted. Stay strong. Bella is a fighter and she's gonna get thru this just fine. Even if she has to have the trach. It'll be alright. I'm sure you'll make it work. Lots of prayers being said daily.

    Take Care,
    Amber McLaughlin,CA

  6. The bad list brings me down, but the good list makes me almost cry with joy and gratitude, and that's what at least I choose to focus on.

    Still prayin'!

  7. I want to reach accross the screen and hug you. Please know that we continue to lift Bella in prayer daily.

  8. And I am grateful for you and Bella, Ang and Alli!! God bless you all.......

  9. We all have a lot to be thankful for. You guys are amazing to keep such a great attitude! I'm hoping for a good next week for Bella.

  10. Sometimes when I fight something, all I am focused on is my fear. And when I let the fear go, so goes the fight. The peace washes over me and I can deal with whatever. I really just take my fear and hand it gently to God. I know you are afraid for Bella. She has already endured so much...but God will not abandon you once a trach is placed. And He certainly will not abandon Bella. You and Ang are blessed with the ability to keep living your lives with each other, and with Ali, where so many others would be just sitting in limbo through all of Bella's struggles in the PICU. Your words uplift me every day, whether I laugh or cry...thank you for inviting me into your world...and blessings to Bella, beautiful baby girl, who will be well...prayers and love.

  11. Thanks for the reminder to be grateful. I really needed that today. Praying for wisdom and healing.

  12. Bless your sweet hearts. (That's the "southern" coming out of me this morning.) We can't begin to imagine the pain, fear, and stress that your family is constantly under. I find it so remarkable that, amid all of pressure, you look beyond and find those "unadorned blessings" for which to be grateful. You survived tha attack of the frozen will survive whatever the coming week holds in store for you. Prayers will be lifted for strength and discernment as you go forward. Hoping you are able to rest in the knowledge that God is holding you - and especially sweet Bella - in the palm of His almighty hand.

    Praying for healing,

    A friend in NC

  13. Praying, praying, praying for Sweet Angel Bella, Princess Ali, Mom & Dad!

    My question - Why the frozen broccoli? LOL

    Tina & family in NJ

  14. I'm glad that things are going well for Bella (minus the trach issue) and that you're able to have such a positive attitude about stuff! Bella will continue to amaze everyone with her ability to bounce back, I'm sure! It was nice to chat with you yesterday...even if it was for a second. :) Praying and thinking of you all, Jennifer

  15. I just wanted you to know you have another person in TX praying for your family and sweet Bella.

    I pray that God will continue to sustain you through this trying time. That He will give you strength, stamina, and wisdom.

  16. Yes, the frozen broccoli does require some explanation, doesn't it?! During an earlier wrestling match, Ali fell off the bed and bonked her head. She immediately started crying for an ice pack and frozen broccoli was all I had.

  17. Love the gratitude guys are on mine.
    I'm curious about the broccoli as well...will you have revenge with a frozen pizza when she's least expecting it??
    For your friends that want to walk, but can' can still donate or register as a non-walker!

  18. i am grateful for the chance to get to know your special family!! there is no way in this world that y'all could ever let bella down! y'all are in my thoughts and prayers!
    w-s, nc

  19. It is such a tough place to be, and yet you are able to come up with a list of things to be grateful for. That right there, is faith. I hope that if Bella needs a trach, it starts on the road to waking up and recovering!

  20. We continue to pray for Bella.

    Dear Jesus,
    I lift Bella up to you today. She needs your healing touch. Please move IN her in a mighty way. Heal her wounds and make her body work with her and not against her. Thank you Jesus for loving us and never giving up on us. You are mighty to SAVE.

    This is a song by Hillsong Australia and it has touched my life. God is mighty to save.

    Everyone needs compassion,
    Love that's never failing;
    Let mercy fall on me.

    Everyone needs forgiveness,
    The kindness of a Saviour;
    The Hope of nations.

    Saviour, He can move the mountains,
    My God is Mighty to save,
    He is Mighty to save.

    Forever, Author of salvation,
    He rose and conquered the grave,
    Jesus conquered the grave.

    So take me as You find me,
    All my fears and failures,
    Fill my life again.

    I give my life to follow
    Everything I believe in,
    Now I surrender.

    My Saviour, He can move the mountains,
    My God is Mighty to save,
    He is Mighty to save.
    Forever, Author of salvation,
    He rose and conquered the grave,
    Jesus conquered the grave.

    Shine your light and let the whole world see,
    We're singing for the glory of the risen King...Jesus (x2)

    My Saviour, He can move the mountains,
    My God is Mighty to save,
    He is Mighty to save.
    Forever, Author of salvation,
    He rose and conquered the grave,
    Jesus conquered the grave.

    My Saviour, you can move the mountains,
    You are mighty to save,
    You are mighty to save.
    Forever, Author of Salvation,
    You rose and conquered the grave,
    Yes you conquered the grave


  21. Hello guys..sending our thoughts and prayers your way..We think of you guys every day..bella is fighting for a cure for all our EB kids and we admire her strength and thank you for allowing us to share in her journey..I will continue to pray for bella's issues to resolve and to avoid the trach. Casey is a wild kid now, but I remember the low in our lives when we found out he had to be emergently trached. I can tell you from experience that you will manage anything thrown your way..But I know we shared all the emotions you are experiencing If you need to vent, just email us...EB and trachs will give you a's reversible though...take it one day at a time and know very soon Bella will be kicking EB in it's ugly butt in honor of all her EB friends...Hugs to you all..
    john, Beth and Casey

  22. Your list is the best! You and Ang are incredible human beings and I want to thank you for being such extraordinary parents to both your girls...the love you give to Bella is very healing and I am intending that be the main source of her recovery! Thank God for you.