Friday, July 30, 2010

July 30: Day +28


Tomorrow, Ali and I head to the lake to stay with our dear friends, the Boschee's, at their cabin for some much needed R&R. I'll bring Ali up tomorrow, spend the night, then come back Sunday. Ali will spend the week with the Boschee family, then Angelique will head up next Saturday, spend the night, and they'll return together Sunday.

I lead with this because tomorrow looks different than today for the first time in a long time! I alluded to "the Groundhog Day Effect" a couple of nights ago, and living into that quantum sameness has really sapped my energy tanks, as you have no doubt detected in my writing. We humans live for the future; that's why TGIF is not TGIS where S equals Sunday! LOL. So, that new future really did two things today: it made today (mostly) fun, and it made it go by FAST.

Today was a dressing change day, which now has also become a circuit change day for the PrismaFLEX dialysis machine. We have to coordinate the two, because in order to change the dressings on the back of Bella, we have to be off the continuous dialysis machine, otherwise rolling Bella on her side to treat her wounds would kick us off the circuit. The circuit (the Prisma machine) is unbelievably sensitive, and it shuts itself down for the most minor of offenses.

Anyhow, because it is quite a procedure to stop the circuit and restart it (I will spare you the details as to why that is the case), AND it is hard on Bella's already fragile blood pressure, we kept the circuit running since Monday and put off dressing changes for 5 days. It was tough to say what her skin would look like after going that long, but at THIS time, her skin is in better shape than her kidneys, so it had to take a back seat to the needs of the kidneys.

The one area I was nervous about was the upper back, neck, and back of head. This area seemed to be breaking down on last inspection, so last dressing change I thought I covered and protected the area well with enough transfer, with a little Alwyn cream underneath to help it heal. Unfortunately, the skin in these areas was for some reason too macerated, or wet, and it just sort off, well, rotted. I actually cried while trying to clean it. There I was, standing on one side of the bed, with the RT and a nurse holding Bella on her side on the other, with another nurse in the room prepping the Prisma. I said something like, "Um, I will keep moving here, I promise, but I think I just need to cry. No one should have to see their baby's skin look like this." and with that, the tears just came out. It was really awkward; the juxtaposition of this tender moment cleansing my daughter's wounds and absolutely horrible looking skin with the sterility of the three nurses in their yellow contact gowns and blue latex gloves under the oppressive fluorescent light and beeping sounds of machines. Somewhere in background, quiet piano music was playing on my boombox... too quiet. Life in a fishbowl.

Fabulous socks of the day

So, we will try changing the circuit on the 4th day this time. So if today is Day 1, Sat = 2, Sun = 3 Mon = 4. On Monday, Bella will have her fist skin biopsy since transplant and a professional photographer will come in and take pictures, so it is perfect timing in that regard. Other than her back, the rest of her skin hasn't shed or broken down like I feared it would. Our main problems from chemo are internal, not external. With that...

Here are the numbers:

Weight: 12.2 (down .1)
I/O: +178 (had to give Bella some saline yesterday to boost her blood pressure above the drugs I described yesterday)
WBC: 8.5 ( YAY! up from 7.9 yesterday)
ANC: 6.1 (6.2 yesterday, no biggie)
BILI: 1.9 (YAY! Drop, Bili, drop! Her baseline was .5 before she started showing signs of V.O.D.)
CSA: 388 (after emailing Dr. Tolar, he emailed the BMT team and they and pharmacy were ON THE STICK this morning! Good. New target is 150 and Pharmacy is finally on the ball.)

After dressing changes, we restarted the Prisma machine and Bella tolerated it well. Prisma is our lifeline right now until Bella's kidneys start working again. To that end, there is a hint that they are still not completely beyond repair....

... today Bella started leaking the tiniest amount of urine on several occasions! This is HUGE, folks. The best indicator of if and when her kidneys recover in the short term is that she starts peeing. So, to see drops just leaking out during diaper changes was so exciting! I can't believe I am so excited about pee. I'll live to regret this at some point in Bella's future, I'm sure, but for tonight, we'll take all the pee we can get! HAHAHAHA.

Ali on the slide at her Pre-School Open House

Open Houses are for... cupcakes?

On the nursing front, we had a new nurse as I knew our primary ANGEL Lori would be off today. I walked in and Amy greeted me with a smile, and a GREAT attitude. As I knew it was her first time with Bella, I quickly gave her the pep talk. Because today was going to be a circuit change and dressing change day, it was gonna get pretty intense from about 8-2, so I explained to her that it took a second nurse being in the room for about HALF the shift on Monday to handle all the complexities of Bella's care on a day like today. I told her to call her backup early and often, and don't feel the least bit bad about it; Bella requires an extremely high level of care. She took it all with a smile, and did great. It's not whether or not a day nurse is going to fall behind with Bella, (it's a given), it's how they conduct themselves WHILE they are behind that makes all the difference. Amy kept a positive, interested, and connected attitude the whole time, despite how stressful it got (and it was pretty stressful from 8-2 nonstop). Now, when I am working along side someone like that, I am HAPPY to train, teach, and share. I kept cheering her on throughout the day when I could see her getting a little beat up by all the meds/labs/care she was juggling, and complimented her repeatedly on how well she was keeping it together, and took the time to share the same with her charge nurse while she was covering Amy on a break. Amy worked a 12 hour shift, and it was an easy, fun environment filled with partnership, good conversation, learning, and a few laughs.

Last but NOT least, please double your prayer efforts not for us, but for Daylon tonight. His parents got some pretty intense news today after they did an MRI to assess the damage of the brain hemorrhaging he suffered. Daylon's life lay in the balance right now; it's really touch and go. THANK GOD Jennifer's mom is in town taking care of the kids so Brian and Jennifer can be with their beautiful little boy through these darkest of times. You can read more (so you can pray more clearly) at their blog:

We love them like family, and humbly BEG for every last ounce of your spiritual energy to be POURED OUT for Daylon right now.

Thank you. We know there are so many out there following this journey our families are on. Your prayers keep us afloat. This is so far beyond anything WE could comprehend, and given that we've just endured a year with EB (which already contained events far beyond our imagining), we are simply in uncharted waters of fear, pain, and suffering.

BUT... we are also in uncharted waters of love, humility, passion, devotion, commitment, perseverance, resilience, strength, and duty. So, remember that pain and suffering often give us opportunities to break through into something new and wonderful, just remember to look and ask for the lesson or blessing in all things. It's there, it's our job to find it.

Good night.

Ali pretending to be mommy at work...


  1. Thanks for the update. We are still praying.

  2. Just in case being in an airplane overnight made me that much closer, I said prayers for bella and daylon as we flew.

  3. Hi Tim: So glad that are getting some much needed R & R. It has to be intense being in ICU for all these days now.
    When I was reading about Bella's back, I also shed some tears. How much do you HATE EB? I bet about as much as I do!!!
    Extra prayers for beautiful Bella and for Daylon.
    Have fun this weekend, boy do you deserve it!!! Keep the Faith. God Is Good. Love Leah's Nana

  4. Hey Guys,
    Still praying for and thinking of Bella all the time. I'm glad that, for now, things seem to be remaining stable. I'll pray specifically for her sweet kidneys and the skin breakdown on her neck and back. Love you guys, and just wish there was more I could do to help you guys and the Edlings. ((Hugs))

  5. Praying for your family and Daylon's family!!! Your writing is amazing and the fact that you can do it all speaks volumes about who you are!!! Thank you for all you are doing for EB and the EB community!!!

    Your strength and determination is inspiring. Your tears were warranted and you wouldn't be human is you didn't shed some now and than... Say HI to Ang for me and know that we are thinking of you all constantly and sending all the good we can your way, in thoughts and prayers... You are truly an amazing family and it is not an accident that God has allowed you to tell this story!!! Many blessings coming to you from here
    Marybeth & Sam #7

  6. Thanks so much for keeping us posted on Bella, Daylon,and all the family. Thinking about all and praying also. I pray alot more pee is to come. God bless & take care. Many blessings as well as prayers from Ponchatoula,La.