Thursday, September 16, 2010

September 16: Day +76


Well, the trach is in, and Bella is fine.

I got in at 7 and got to work prepping Bella for surgery. We had planned everything out pretty well the night before, so it worked out quite smoothly this morning. We headed down to surgery, and Dr. Rimell and the entire staff were extremely accommodating and appreciative of my input and willingness to help. I suppose they aren't used to parents who are so hands on (literally) with their kids' diseases/injuries. Anyhow, it didn't take nearly as much finagling as I thought it would to get Bella positioned just right. A few modifications to their normal setup and we were ready to go. Normally, they use 1/4 inch tape and tape the patient's chin to the bed by craning their head back, sticking a roll under their shoulder blades, and taping the chin over the patient's head to keep the neck exposed. We stuck mepilex transfer under her chin, then used mepitac tape instead. This diffuses the pressure by spreading it out over the 2 inches of the mepitac.

I left while they did the draping and cutting, and was brought back in not too long after I left. That's a good sign, because it means the surgery went smoothly. I got out the pieces I thought would work, and thanks again to the help from Courtney Roth and John Neikens, both EB parents of kids with trachs, we dialed everything in quite nicely.

For those interested in how we dressed her exactly, we placed a 4"x4" mepilex Ag sponge under the trach. We put a light mix of aquaphor and zinc oxide on the sticky side so it would slide into place. For the spot where the mepilex fans out under the chin, we placed a 3"x2" piece of mepilex transfer underneath. This way, no part of the trach touches skin. For the collar, we took mepilex transfer, cut it into two 8"x2" strips, and then placed sticky side to sticky side, so I could adjust it if necessary. I made two of these. It started under the mepilex Ag, and wrapped around the back on each side, so it overlaps in the back. Then we used an adult posey tie which velcros to the trach in front, wraps around the back, and velcros around the back as well. Finally, we used a vent anchor to attach the vent to the trach. It is also a soft posey tie that works exactly the same way as the trach collar. A gel pad between the shoulder blades combined with one behind her head where her pressure ulcer is creates a pocket of space for the collars in the back to get air. It worked out better than anyone expected.

Funny, I bet God was never worried about it all. He can see what we can't. I am humbly reminded of this after reflecting over how much anxiety I had over today, compared with how effortlessly the day went. What a great lesson to be taught again and again and again...

We were back in our room by 9:30. We went back on Prisma by 11:30. While Bella rested with Lori her nurse, Angelique and I went to lunch and coffee and spent some quality time together. It is nice when we get the odd chance to just be together, just the two of us. The rest of the day went smoothly; Bella's pressures were a bit low after going back on Prisma, so we had to give her some fluid. We really weren't too worried about it though. To have surgery and a circuit change is a big day, and as long as they went well, dealing with low pressures with a little fluid was fine.

Now, we let Bella heal for the next week. Once the trach is healed, we can then turn down the sedation and wake her up. So, we'll be taking it easy for a few days before any action occurs. That's fine. We'll see if we can sneak off any fluid between now and then. Wish us luck. as you can see, Bella looks like she's gonna POP at this point.

Thanks for all your prayers, thoughts, wishes, and intentions. We really felt the power of your support today. It was a good day.

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

God night.


  1. I am glad to hear everything went smoothly today! Prayers for strength and healing for Bella!

  2. It sounds like you had a big day, but it went pretty smoothly.
    Great job Mom and Dad. :o)

  3. Tears in my eyes as I read about answered prayers and as I look at the pictures of your sweet, precious Bella. May you all continue to feel the power of the prayers that are being lifted. And may Miss Bella now begin her journey around that corner we've all been waiting for her to turn! God's peace to you all tonight.

    Praying for healing,

    A friend in NC

  4. she is absolutely breathtaking. i can imagine you and your wife were overjoyed to be able to smell her cheeks and kiss her.
    thinking of Bella everyday

  5. the pictures of your sweet bella today are just priceless! i am so glad things went well today and pray that this will be the first day of many wonderful "firsts" for bella :)

    god bless y'all!

    w-s, nc

  6. Tim and family...
    So glad to read your update and so happy surgery went well..we thought of you guys all day today. I'm sure it was full of emotion for you guys and not the path you hoped you'd be taking but there's a road paved for all of us and sometimes it's not what we WANT it to be and we just have to roll with it...see the positive...the blessing that is hidden in it..(and sometimes you have to dig REAL deep to find it~ :) Trachs are overwhelming at first...but so was EB when you were first faced with it..and you will roll forward with this too and soon be it's master! Glad John could help or email anytime...
    Hugs to you all..
    John, Beth, Zach, Casey and Becky Neikens

  7. Can't wait to see that little mouth smile! So glad it went well...
    I had a peaceful feeling all day....thinking positive for her and the doctors, and you and Ang. God night indeed.

  8. How lovely to see little Bella's face again! Can't wait to see a smile on that sweet face!
    :) Prayers for healing energy and a restful, peaceful week. Blessings to you all, and especially Bella, beautiful baby girl, who will be well!

  9. Very thankful that the procedure went well! Praying for Bella's complete recovery. Your blogs touch me each day and have really made an impact on my life.

  10. Jack and Molly's NanaSeptember 16, 2010 at 7:37 PM

    Oh my gosh! I, too, have been praying and wondering and hoping and thinking of and for all of you today (I think there's an "oldie" in there somewhere). What an amazing bit of news! I ordinarily don't check your blog until just before I go to sleep; for some reason this evening I checked early, and I'm so glad I did! And no I'm just sitting here grinning, and imagining the day when the four of you will be doing the same together. Go, Bella!

  11. As I prayed and thought about Bella today, I just knew that she would make it through the surgery OK, and that you would post pictures of her beautiful face, puffy yes, but still beautiful, so nice to see her sweet little lips. I know the idea of a trach is scary (Leah had one), but now Bella can get back on the path to healing and getting back to the BMT floor. We are praying for healing and strength so Bella can continue on her pathway to health. Beautiful baby Bella, she WILL be WELL! Rest & heal Bella
    Judy T.(Leah's Grandma) in Bowie, MD

  12. So wonderful to see Bella's sweet, sweet face. I'm so glad the surgery went well. The pictures bring tears to my eyes and you are both so very brave and strong. Bella is here to teach you say and I really think she has taught so many people so many things along with help from her parents. I also just had a feeling today would go good, and we are so very glad that it did. She is beautiful.
    God Bless.
    Amanda, Bryce, and Corynn

  13. It touched my heart and brought tears to my eyes to see you and Angelique kissing Bella's precious cheeks. That had to be such a special moment for the two of you. What wonderful parents you are. I am so proud of you. I love you.


  14. Sweet Bella... can't wait to see her beautiful smile again. So glad everything went so well.

  15. Precious angel . . . so glad it went well. Praying you get rest tonight. Put you all on a prayer chain. Take care, and healing is ahead!

  16. Baby Bella is so strong and brave as are you, her parents. I'm so happy today went better than you hoped. Another miracle! Greenie

  17. So glad everything went well today!

  18. Praise God!!! Please give Bella a kiss from me!

  19. so happy to hear everything went well! Enjoy this next week together before the she'll be up and demanding of your attention. :) WE've been thinking and praying for you all and Bella today! Love, Jennifer

  20. What a relief! I am so glad things went smoothly. God teach us everyday through Bella.

    Keeping our continuous thoughs and prayers.

    Carla, from Portugal

  21. Ditto what your mom said...can't say it any better than that.

  22. I'm so relieved, as you are, that everything went well. The trach, even though rather dreaded, will likely prove to be a giant step in the process of moving forward with recovery. Rest, sweet Bella. Heal. Then start giving us some of your impish smiles! Hugs, Terri R.

  23. Thanks for updating. First thing I did yesterday morning was say a prayer for Bella, that her surgery would be uneventful. Thoughts and prayers for you and your family.

  24. Beautiful Bella was on my mind all day yesterday. I am so happy that everything went so smoothly. I know it is scary, but before you know it you will be handling the trach right along with her daily EB care.
    It is truly a blessing and now Bella can begin to heal. God Is So Good. Love and Peace. Love Leah's Nana

  25. I am so happy to hear all went well. It's so good to see her face again. Even as puffy as she is, she's beautiful. You and your family continue to be in my prayers.


  27. How beautiful she is, extra fluid and all! What a blessing that surgery went so smoothly and you can see her adorable kissable lips again! I can't wait to hear how she does from here on out. :)

  28. Lynne, Bob, Jack and BenSeptember 17, 2010 at 9:29 AM

    Hoooray! So amazing to see Bella's face.

  29. Yeah! So glad things went well for Bella. My favorite picture to date of you and Ang kissing her adorably puffy cheeks! I bet that felt sooo good! I can't wait to hear about how well she does healing this week.
    Praying for her and you guys always.
    The Vanderbooms

  30. So happy everything went smoothly! She really does look like she's about to pop. You both are amazing parents. That has to be hard to see every day... praying for you all!

  31. I am so glad surgery went well! Praying for a calm and quiet week for Bella to heal and move forward!

    Tina & family in NJ

  32. Up till today we have been lurking AND praying for Bella and your whole family. But after seeing this story on another blog. I had to share it with you guys. Your courage to take this journey with Bella is going to save the lives of countless people around the world!

    For now this little fellow needs urgent prayers, spread the word if you can!