Wednesday, September 15, 2010

September 15: Day +75


T'was the night before trach...
and all through the house
you could hear the teeth grinding
inside of my mouth

I think I need a mouth guard to help my jaw; it aches pretty much around the clock from clenching it 24/7... and tonight it is howling. I was embracing the trach earlier today, but now on the eve of its installation, we just did 3 successful pressure support trials. She's doing so well on the vent, but her blood pressure continues to require more and more vasopressors. It is such a conundrum. I hope I can sleep tonight.

I have to be in by 7 to prep for surgery. It's gonna be a busy time down in the O.R. I met with Dr. Rimmel today and he basically told me he needs me in there from beginning to end, minus the part where he's cutting a hole in my kid's throat. He confided that he'd freak out if he was in the room and it was being done to his kid. So as not to have him worry about me, I told him I would step out for that part (you can't see anything anyway, and it's far from my first surgery with Bella, and frankly, I can't imagine it comparing to the intensity of her birth,but whatever). Then, as soon as he's done, I'll come back in to set the bandages and dress the new wound.

Then the really fun part begins. We have to figure out how to leave her be for up to 7 days straight while the track for the trach heals. No one really knows how we're going to pull this off. Everyone admits that we don't know how we're going to do any of this until we actually get into the OR and onto the table.


Good thing I'm used to improvising with Bella.

In addition, we can't get Bella to relax her fingers anymore. They are permanently clenched. It's not that they are stuck; she is actively clenching them all. the. time. We have been splinting both wrists, right elbow, and wrapping grips inside her palms to help keep her in as neutral alignment as possible. Today, we tried one more technique to get those fingers straight. We are going to add one layer of cotton balls stretched out between the existing palm roll and her finger tips per day until we have slowly straightened the whole right hand out. We straightened them all the way and tried splinting her for 20 minutes twice today, but it was too much pressure on her fingers, so we're going to go really slow. Shock.

I'm sure inside this splint Bella is giving me the finger...

On top of all this, something is brewing in Bella's liver, and again, it has the docs completely baffled. There is some sort of clot, but all her labs are completely normal and she presents with absolutely no symptoms. They did a liver ultrasound on Monday just to take a peek since it had been a few weeks to see if the VOD was behaving. Well, they found an area of the liver that wasn't getting any blood flow. No one told me till yesterday. So, they ordered another ultrasound today because the head doc simply couldn't believe the results of the images and figured they were obscured or false. Well, they did it again today and saw the exact same thing; no blood flow in one portion of the liver. Weird. They aren't going to do anything about it since it's not technically messing with any part of Bella, but as soon as the trach heals, they want an MRI to see what exactly is going on down there.

Still, I don't have the sense at all that Bella is at risk. I feel like she is really pissed off at all of us for getting her so far behind the 8 ball with the amount of meds she's been on for so long. Now she is so weak from atrophy and edema that she is at risk, but I can just feel her fire under it all. It's like we've got her tied down, or weighed down with wet blankets, trying to contain her. I don't know. That girl is a PISTOL and always has been. That hasn't changed. And that is a GOOD THING.

So, it's scary, no doubt, but I know she's counting on us to guide her through this safely, so come tomorrow morning, I'll be up and ready to meet it all head on. She's depending on me to watch out for her each time she heads into the O.R. so, what else can I do?

See you all on the other side.

God night.

P.S. One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."


  1. My gut tells me what your gut does, it has from the very beginning. Bella is going to come out of this, I feel it in my bones. I log on each morning (or stay up late every night) thinking this is going to be the day that things clicked. Maybe the trach will be the turning point that she needs.

    Prayers for you all tonight and tomorrow.

  2. Be still and know that I am God. Psalm 46:10

    bella has captured my heart and will definitely be in my thoughts and prayers today...all of y'all will be.

    tim...i'm clinching my teeth especially hard on my mouth guard right now so that you can give yours a break :)

    god bless!
    w-s, nc

  3. Prayers and lots of gentle hugs for your little sweetheart, will be thinking of you tomorrow the whole day !!

  4. praying tonight and fasting is in order tomorrow morning for Bella! Praying that the Lord be in the OR and give knowledge, strength and patience to the doctors and staff. Praying that Bella be protected with the blood of Jesus! I pray and believe that ALL will be just fine!!!!
    Get some rest and leave it @ the feet of Jesus!
    xo Bella,

    ps...Sara...going to email you..

  5. hoping and trusting everything goes well tomorrow (today).
    Love and hugs to you all

  6. Good luck, will be thinking of you all
    X Barb Melbourne Australia

  7. Praying this will bring about the change you all need!

    Aunt Mary

  8. Keep that strengh. She has proven to be a warrier and the trach is just one more batel that she (you all) will win.

    Send you our most sincere prayers.
    God is good. All the time.

    Carla, from Portugal

  9. Praying extra hard this morning and hoping your little "pistol" comes through with flying colors. Praying for peace in your heart as you head into surgery.

    Praying for healing,

    A friend in NC

  10. Every extra prayer I have today is going toward Bella and your family. I pray for her daily, but today - today she gets them all!

  11. I'm continuing to pray for your sweet Bella! Praying you will be strong for Bella and the docs during the surgery. I believe God's wisdom in knowing you and Angi were just the parents Bella needs to see her through.

    Praying for wisdom as the docs/medical team/you use your knowledge in caring for Bella. Also praying that this gives her what she needs to keep the pressures up and bust oout of the PICU!!

    Looking forward to Bella getting back to 5D!

    Praying in Waterford, MI
    Kim M

  12. I've been following Bella's story for months now...first time to actually leave a comment.

    Praying for Bella and your sweet family. First thing each morning on get on to see how Bella is doing...she is a lucky little girl to have a Daddy like are her voice and her hero!

    Bless Your Sweet Family

  13. Tim...thinking of you this morning as we were at the same place almost two years ago. I feel for Bella the same way I felt for Casey. Know this..after the denial, guilt, will always make the decision that is best for your child. Do not second guess yourself and do not blame yourself for any of it. Out of every event/situation comes a blessing..sometimes of course you have to dig deeper to find it than other times, but it's there...keep your eyes open to it and you will see it....I pray this step will bring your Bella back to you and move her one step closer to a cure...Stay strong, but take a break too..You will figure it all out as it comes along..if we can brainstorm with you during the process just call..thank you for allowing us to share in your family's journey..hugs, kisses and god's blessings to you and your family.....
    john, beth, Zach, casey and Becky..

  14. We'll be praying that everything goes well today.


  16. Still praying for your precious Bella and for y'all.
    Lauren, a momma in TX

  17. Everything is gonna be allright you ´ll see. My prayers are with you all.

    Lot of positive energy.


    Sandra, Portugal

  18. Extra, extra prayers for beautiful Bella today. Keep the Faith. God Is Good All The Time.
    Please update as soon as you can. Thanks for this amazing journey with your family. We all love you guys. Love and peace. Leah's Nana

  19. My prayers are with you today. I hope everything is going as well as it possibly can. Bonnie

  20. Thinking of you all as you face this little bump in the road. Be brave Bella!!!

    Shana XXX

  21. Bella, stay strong! Will be thinking about you and praying for you and your family all day, as always.

  22. We are storming the heavens with our prayers for a successful surgery today - and that it be a turning point for sweet Bella. You guys ROCK. I am in constant awe not only of your resilience and endurance in handling each thing that comes your way, but that you're willing and able to share your journey with all of us so poignantly and with great humor. I think all of your posts should be combined into another book!!

    Anxious to hear outcomes later today. May the Holy Spirit guide you all.

    Adrienne & Pete Provost
    Palatine< IL

  23. Sending hope and strength for Bella today...hang in there Honeybear! May God guide the hands and minds of the doctors, and may He lift you up and bring you peace. Blessings to you all, and especially sweet Bella, beautiful baby girl, who will be well!

  24. My thoughts and prayers are with all of you, especially Bella, today.


  25. Sweet Bella...I am praying for you today. This is going to be the turning point for your recovery...God is telling me. I am listening to His whispers and trusting in Him. I pray for the Dr's and nurses that are providing you care. Sweet Bella, we miss you and are waiting to see your beautiful smile soon. You are one lucky girl to have such a beautiful family. They love you so much and are trusting in the Lord that this is what is best for the time being. It will only be temporary, I know it.

    Lord, I ask you this morning, with all of my being, with all of my strength and dedication to you Lord, may you guide the Dr.'s and nurses with Bella's surgery. May you bless Bella and her entire family with everyone's love and prayers, let them strenghten Bella as she steps closer to recovery. Lord, I trust in you, I am calling to you to carry their fears and burdens. May Bella and her family feel Your loving arms around them. I know you are with her Daddy in sugery, help him to remain strong as you have each and everyday in Bella's journey. I thank you Lord, I thank you. AMEN

  26. I know Bella will be a super star in surgery! She is so strong and she has you there for additional support! I think about her (and the fam) many times through out my day and often close my eyes at my desk to have a quick chat with God on her behalf! :)
    Praying for a sucessful surgery.
    The Vanderbooms

  27. Tim, Angelique, Ali and Bella,
    HUGE prayers and hugs being sent your way.
    You are all amazing. We cannot even put into words how much admiration we have for you!
    One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."
    The Setto Family

  28. Prayers for a successful surgery headed your way. Looking forward to a great update!

  29. God is holding Bella in His hands!
    He has given Bella that 'pistol' spirit full of strength, and he is faithful. My prayers are with your family!!
    Natalie Astor

  30. Lynne, Bob, Jack and BenSeptember 16, 2010 at 1:10 PM

    Hearts and prayers with you guys always. Inspired, as always, by the fight in this tiny little girl. Sending an extra big bubble of love for the morning.

    Throughout the roller coaster ride, we continue to hold this: One day, Bella will look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

  31. I've been following for the past month. Being a caregiver of a person with EB, I am reminded what the parent/patient is experiencing. As caregivers we can become very focused; we forget what the parents are experiencing. I will continue to follow Bella's and the author's journey so my heart continues to soften and just melts for the client I'm lucky enough to take care of. Thank you for bringing it to my attention.