Thursday, August 26, 2010

August 26: Day +55



Wow. You are all amazing. Thank you so much to all of you that took time out to post a comment, no matter what you said, and no matter how long it was. Today was dreamlike reading your words. To hear what you've been feeling and praying for on our behalf... without those comments, we don't get to see just how many people are thinking about Bella, and praying for her daily. It was no coincidence I was able to handle the day at hand with such happiness.

The day started out with Angelique calling in sick with a cold. It came on outta the blue yesterday evening, and she spent the entire day today in bed. So, after a half hour in rounds this morning (seriously) to bring the new attending BMT doc on board and wrestle with the many issues on hand, I was off to the pharmacy to get cold medicine for my sweet wife.

After dropping that off back at RMH, I got back to the hospital and we did a dressing change since we were changing the dialysis circuit today. We had a wound care nurse come to look at the back of Bella's head. Not good news. Bella has developed a decubitus ulcer, or a bedsore. This is the most common hospital-acquired injury out there and is taken very seriously. Reports had to be filed, pictures taken, the whole bit. Long story short, back in July, RT gave her a harness for her breathing tube that was neoprene with a hole in the back. It was a chin strap that was turned around backward so the hole was behind her head. Even despite copious amounts of protective dressings, when she got really fluid overloaded in July (the first time), her head swelled through the hole in the strap and the skin broke down. Then, due to her prisma line being soooo tenuous that a diaper change caused problems, we were unable to really get at the wound very well except for quickly while we had 3 people roll her over. Well, given where the ulcer is, it was really hard to see clearly. Today, we rolled Bella over in the opposite direction while she was off her circuit and we finally got to see the true nature of the wound.

Now, I'm going to say what I'm going to say, and please don't rush to my aid with your comments to make it better. As the person in charge of her skin care, I felt like such a failure when I saw the extent of this injury today. How did I let this wound get so bad? Again, just let me hang out with that... it's okay. I know what the circumstances were, and while they were simply beyond my control for the cause, I'm just amazed the wound lay undetected for so long. I understand why... we simply couldn't see it, given her lines and prisma, but at the end of the day, it was and still is my responsibility to care for her skin. Everyone on the treatment team knows this and defers to me on her skin care.

Anyhow, having said all that, the wound care nurse was extremely complimentary on the job I was doing, and liked the way I had been treating the wound up to this point. The only thing we are going to do differently is roll her over every day and dress the wound with a fresh dressing. Up till now, we only changed the dressing once every 4 days when we'd change prisma. Well, it'll take 3 people a day now to do it, but we have to treat this very seriously as it is a 2 cm long hole in her head that gets no daylight, lots of body heat, and moisture from sweat... see where I'm going with this? Major priority now.

In other news with Bella, we dropped her precedex to next to nothing today. This is one of the sedation drugs that has been masking how Bella is really doing. Bella is clearly going through withdrawals; she is shaking like a leaf on a tree. She is swollen to the point where I don't even recognize my little girl any more. I won't show pictures today because honestly they are extremely upsetting. However, her blood pressure hasn't looked as good as it does today in a LONG time, so we are all very, very happy about that. It seems we found the right amount of vasopressin to support her blood pressure. We are starting her on methadone to help her with her withdrawals, and we are going to wean her as fast as she'll let us off as much as she'll let us to try to find the kid who came in here two months ago with a swollen airway.

Just before going back on prisma, we got the call that the docs all wanted to get a CT scan of Bella's head, chest, and abdomen in an effort again to see if they can spot any infections anywhere in her body that they've missed so far. She had a fever last night for the first time since chemo, so there is a concern that there is an 'occult infection' sneaking around in there that is not showing up on cultures, but continuing to be responsible for the soft blood pressures. So, we headed to CT today around 2 and did our thing. Never a dull moment.


Once back up on prisma, it was time to get back to RMH. I had to go to the store to get fruit for a school party for Ali tomorrow, then pick her up from school and meet momma back in our room at RMH. We hit dinner and bingo, and came back up for playtime at RMH.

There are so many issues on the table that are going to take a whole lotta time to undo. That's okay. I got nothing BUT time. Right now, there is nothing I want to do more with my life than completely rehabilitate my little girl. I watched parents drop their kids off at U of M today. I love this time of year. It holds such promise, such possibility. As I walked past the dorm, the hospital loomed overhead. I looked up toward Bella and promised her I'd drop her off at college one day. I don't care what it takes from me to make that vision a reality. There is nothing in my life that is worth more than dedicating my life to this little girl. I used to have dreams of financial wealth and abundance. Now, I dream of Bella. I know that God will continue to provide my family the means to allow me to dedicate all my time if necessary to being full time dad/physical therapist/occupational therapist/music therapist/wound care specialist... caregiver, whatever it takes. Now, if I could just sell a few more books... :P

So, all in all, there is still a very positive feeling in the air about "solving Bella." One thing that is happening is A LOT of communication and brainstorming, and that is a good thing. One new thing that is on the table is that Bella may need a tracheotomy. The breathing tube is beginning to cause more problems than solving, and so Dr. Tolar is spending a week talking to EB experts in Colorado and Cincinnati to discuss the possibility. It is completely reversible and is done for ICU patients when they know they will be intubated for more than a month normally. The problem in this case (why they haven't done it sooner) is that with a BMT patient, you have to wait until they are fully engrafted, and even then, they usually don't feel comfortable doing this procedure before day +90.

Remember last week, when we had to picture open heart surgery as an option for her outflow obstruction that magically disappeared? This is the nature of being in the ICU. This week's nightmare? Tracheotomy. Not that there's anything wrong with putting one in. We did the G/J tube fully expecting at some point to go back to a G, and eventually get rid of that. It's just that it is a rather invasive procedure that we never in a million years thought we'd have to wrestle with as RDEB parents. Our JEB parents in the EB community have to wrestle with this choice more than we do since JEB involves the lungs and RDEB doesn't. With RDEB, the debate is usually over G tube or not. So, we're now getting to bounce this one around as well.

Honestly, it's just another conversation. I am hoping Bella rallies so we don't have to go down that road in reality. We're getting used to going down scary roads in conversation. We've had to do that since the day she was born. Yes, it is stressful and scary, but it is also just the nature of the beast. We can't "wish" we didn't have to think about such things. EB requires us to deal with things as they are, not as we wish they would be. It's a powerful metaphor for life in general. Life is much easier to navigate through when you are relating to what is instead of what you WISH would be, or better, what you think SHOULD be. That's pretty useless. It's easy to do, don't get me wrong; I'm first in line for the award for having a 'flair for the dramatic.' That is why I am so blessed to be married to one of the most grounded people I've ever met. Angelique has taught me the simple (but not easy) practicality of dealing with the matter at hand, not the matter in my head.

Alright, I've gone on for long enough here. Thanks for indulging me. What I am reminded of each day here is that we are far from alone. There are parents fighting for their kid's lives every day in every children's hospitals in everywhere day after day after day, and some win, and some lose. I eat dinner among heroes every night of the week at RMH. When you hear the struggles another family is facing, it puts it all into perspective, and above all, despite it all, it reminds me of HOW ABSOLUTELY BLESSED I AM, AND HOW BLESSED MY WHOLE FAMILY IS. I give thanks every day for exactly how it is, right here right now.

Good night.


Fabulous socks of the day...

36 comments:

  1. Hi Tim,
    I tried posting last night, but my phone wasn't cooperating. My family and I from Ca (and South Carolina--we moved back to CA), and my husband's family in Redlands, CA and more have been praying for you all. I think about you all so often. We are so touched by your faith, strength, and endurance. The Lord is really working through you all. Still praying for Bella's healing. It's a miracle about her heart condition. I prayed that God would heal it and take it away. God is so good. Anyway, you are fully covered in prayer. Each day is a gift, and and offering. Take care and blessings . . .

    ReplyDelete
  2. I took a peek at your comments from yesterday. Wow...over 100 people commented for sweet Bella. It just amazes me how the story of one little girl brings out the love and caring in others. Others that havent even met her (me included). I have grown to love and care about Bella and Daylon. They have brought me joy and have brought me to tears. They have had me praying to God and yes I must admit begging too. Hugs and kisses sweet Bella.

    Denise, WI

    ReplyDelete
  3. I went back and read all the comments and sat and cried at my computer.
    She's got the whole world, in her hands...
    How will you ever accommodate all of us at her second birthday?
    Lots of love. All the time...

    ReplyDelete
  4. storming Heavens for precious Bella, Daylon and you amazing parents Heavenly Father, we praise You and Worship You. Bless Ringgold and Edling families where they are right now.Equip all medical staff and their families,give them strength,knowledge,patience and perserverance. And most of all increase their gift of Faith.In the precious name of Jesus Amen. GO BELLA!!

    ReplyDelete
  5. Sorry i did mean to tell you its Dawn from Australia and yes I would love to come to Bellas 2nd birthdayxo

    ReplyDelete
  6. Didn't get a chance to comment yesterday, but I'm still here, reading and praying. Hang in there...and always remember that Bella is going to say that she was born with a rare skin disease, but then she went to the hospital and when she left she was all better!

    Amy

    ReplyDelete
  7. Your words are amazing! I could read your posts for hours! I hope in the near future, your posts are full of happier times with Bella running around playing! I can't wait for that! Go Bella, GO!

    ReplyDelete
  8. Jack and Molly's NanaAugust 26, 2010 at 10:33 PM

    I guess when you ask for comments, you really get what you want, huh? How gratifying to know that your family has touched so many lives in so many different places, and more importantly, that all of those people are sending their prayers for your family on a daily basis. So happy to hear about the communicating that's happening there; just look what can happen when everyone's on the same page. Rest well. And make your lovely wife a cup of tea with honey and lemon. See you tomorrow............

    ReplyDelete
  9. I read about Bella every single day as a mum of a gorgeous EB angel who I miss every single second of the day. When we were in hospital and had issues with Prisma and the back of the head, we used a neck brace covered in polymem to ensure my gorgeous boys neck was safe, elevated and also placed polymem behind his head on the pillow as it helps with cushioning and also helps to take away the wetness from the sores. The polymem can alo be changed out easily by just lifting her head when you work on the prisma, as her neck is supported by the neckbrace. I hope this can help if you can try to use polymem, there is also a polymem with silver that may help.
    Thinking of Bella all the time, your time with her is so precious, I miss my baby every single day, RDEB is so hard xx

    ReplyDelete
  10. Put me on the list for that birthday party! I'll bring some good 'ole southern sweet tea!!

    Praying for a good weekend for Bella and her sweet family.

    Susan
    A friend in NC

    ReplyDelete
  11. I posted yesterday but forgot to mention how much I love the Fabulous Socks of the Day!

    ReplyDelete
  12. I forgot to comment yesterday. Praying for Bella in PA!

    ReplyDelete
  13. Praying for your sweet Bella everyday from S. Florida. Is it too early to RSVP for the party? ;)

    ReplyDelete
  14. I don't know you, but I check on Bella daily. My "babys" are 17 and 22 years of age, but I share that encompassing, painful love that you have for Bell. Haugs and prayers from Ga.

    ReplyDelete
  15. That is me above. Obviously I should not post before putting in my contacts..............

    ReplyDelete
  16. Praying for that sweet girl today. And also buying a book today! :) I have been wanting to buy and read it for awhile now! So excited!

    Kara, NY

    ReplyDelete
  17. Finding a wound previously undiscovered so it can now be treated properly...another piece of the puzzle in place. Bella's story of providence continues, drawing love and prayers from the globe as it winds its way home. We are with you every day, following the ups and downs, cheering, crying, sending our prayers for Bella and her lovely family...sending strength and hope. Blessings to all, and especially to little Bella, hang in there honey, beautiful baby girl, who will be well!

    ReplyDelete
  18. Love to you! I'm holding my newborn daughter right now as I read this and getting tears in my eyes. A parent's desire to have to drop his child off at college someday seems so simple, but it is so difficult. I believe (and I pray) that you WILL drop Bella off at college someday. Maybe she will become a doctor and help Dr. Tolar find new cures for kids who have terrible diseases! We can dream big!

    Blessings for today, from Pittsburgh! ~Susan

    ReplyDelete
  19. Hi,
    Couldn't post anything yesterday when you asked for comments but you were, as every day since I found yours and Daylon's blogs through Elly's Swedish blog, in my thoughts. I wish for nothing else than all precious little EB kids to get better. Let's hope that BMT will be a tool to improve the quality of many lives. You are strong and wonderful!
    Alexandra, a Swede in Australia

    ReplyDelete
  20. Will also ask for a speedy recovery for Angelique, and that Tim and Ali don't catch the cold. Come on Bella, let's get out of the PICU, OK? You can do it! We all know you can, because God can make it happen. Time for a change of scenery little girl! Keep hanging in there Mom and Dad. Love to read about Bella - and love to read all the comments and see the abounding care and love flowing to that little girl. Have a really good day. Hugs, Terri

    ReplyDelete
  21. I also didn't get a chance to post yesterday, but both days tears come to my eyes as I read. You are both inspirations, your outlook on the situation and life is amazing. If you don't mind I will post again about Bella in my blog...I know people are reading because in their own blogs they mention that they are thankful for the health of their children. Again, PLEASE reach out if you need anything. I will be at the U of M everyday. We pray for Bella everynight, and we pray that she has a good day today and the withdrawls aren't severe. Love to your family.

    ReplyDelete
  22. Your inner space and energy is connected to all those around you, treat yourself with kindness.

    ReplyDelete
  23. Tim, I personally know two with RDEB who have trachs and I know there are a couple of more out there. So while it's rare, it does happen. In their case it was the epiglottis that scared shut, and nothing to do with the lungs.
    but i am not sure when it comes to an RDEB baby who has been on a vent for so long. If you'd like to talk to another parent of an RDEB child with a trach i know Bethann and John would be happy to talk with you. John is on Facebook and I have their phone # and email if you'd like to email me and i can pass it along.

    ReplyDelete
  24. I did't get a chance to comment yesterday but I try to check in on your blog every single day. Usually first thing in the morning, just hoping for some amazing news! These EB babies and their families are something else. It's a horrible disease, but I'm so thankful that there is such a great effort underway to help cure it. I include Bella and her family (as well as the other EB kids) in my prayers daily. She's such a fighter and she obviously has a very stong family acting as her advocate. Keep up the good work and God will do the rest!

    ReplyDelete
  25. It is heartwarming to read all the comments. And these are just a few of the people following Bella's journey and praying for you all. What was the # of hits that you told me you get each day? I know of so many people following your blog (or not) who are praying for Bella, you, Ang and Ali.
    What an inspiration your faith,love,dedication, and perserverance are to so many. As people have commented, it is a good way to start the day and put life into prospective --with gratitude. What a gift you are giving to so many beyound anything you can even imagine. To borrow your nephew Harrison's favorite expressions:"Hey, you're awesome! Hey, I love you!" Prowd to be your mom.
    Bella rallied to avoid open heart surgery, kicked the VOD, and so many other serious issues during this long BMT process. Here's praying she will be able to avoid a tracheotomy. She has healed so many skin breaks, she can handle one on her neck. Perhaps her new cells will allow her to heal even faster than before.
    Bella's first birthday was a blast. You'll have to talk to Ralph Jr. to book the Arena for her second birthday. People will be coming from all over, even my dear friend Dawn from Australia.
    Love to all, Mom

    ReplyDelete
  26. By the way, Bella is my fingerprint friday this week. I totally stole a picture from your blog.

    ReplyDelete
  27. Lynne, Bob, Jack and BenAugust 27, 2010 at 9:39 AM

    Holding the vision of you dropped Bella at college. Present to all the crazy blessings of life and taking on dealing with things as they are. Sending prayers for Bella.

    ReplyDelete
  28. Praying for peace and healing today. Praying for the Dr's and nurses to continue to fight for Bella's care. Praying that the Lord will lift and strengthen you today and that Ang has a speedy recovery. I picked up some fabulous socks to add to Bella's collection. I will be sending them this weekend (i hope i got the right size (-:). Look forward to your update tonight. I put all my faith in your closing... "Yeah, when I was born, I had this rare condition, but when they brought me home from the hospital, it went away." I know God has heard Bella’s calling, she’s going to do big things in this world, my FAITH tells me so.

    ReplyDelete
  29. A long time ago, when I was visiting a family in Texas, I saw a sign in their bathroom, with a pretty nice saying... which may sound a little bit cliché, but it popped in to my head as I was reading today's entry, so, here it goes: "A road with no obstacles probably doesn't lead anywhere".
    An Bella's gonna go far, and your family will walk with her in all the wonderful things that lay ahead of her.

    ReplyDelete
  30. Oh, I found you and Daylon exactly the same way Alexandra did, through Elly's Swedish blog.

    ReplyDelete
  31. The socks are so cute. Praying for Bella and your family.

    ReplyDelete
  32. Hi Dear Friend! Man, I can't believe how many peeps are already planning on coming to the 2nd birthday bash! It really is so awesome.
    We love you guys and are praying for Bella and her wound. And for Ang to get better too :)
    HUGE amounts of love coming your way as always!
    Oh, and P.S. I posted the link to the blog on my fb page and got some comments from people who are now praying! I am making it a once a week thing!

    ReplyDelete
  33. Fom North Carolina - those socks rock! I am praying for your family and Bella's doctors. There are so many uncertanties on the table; I am so glad you are Bella's dad. Your energy and dedication are amazing. I hope Angelique makes a rapid recovery. Your visions of taking Bella to college brought tears to my eyes. So touching. Thanks for sharing.

    ReplyDelete
  34. reminded me of this song for a smile....

    http://www.youtube.com/watch?v=ODi_c9MytqA

    ReplyDelete
  35. Daily prayers from Flower Mound, TX. We love you guys! Bella rocks, what a trooper!

    ReplyDelete
  36. “The Ringgold Experience”

    That which Allows moments of clarity
    That which Nurtures our souls thru empathy
    That which Alleviates our constant self pity
    That which Binds strangers together
    That which Erupts our innate ability to care
    That which Lifts the spirit
    That which Liberates us from ideas of weakness
    That which Attains the true gift of God...

    to Unite and Love one another as we are.

    A MINDFUL HUG FROM AFAR....
    T.G. VanderGold.

    ReplyDelete