Monday, August 2, 2010

August 2: Day +31


Pre-Transplant...


Post-Transplant Day +31

Ugh. The Bachelorette is playing in the background and I think I'm gonna hurl. Three words:

Sick and Twisted! (Sorry - moving right along...)

We got "kicked out" of Bella's room while big Dave turns on the dialysis machine, so we're hanging out in the family lounge. There isn't much room in that room and Dave needs his space which is fine; I like Dave; he's just a big giant teddy bear. He asked us, "Do you guys wanna go get some coffee?" I asked him with a smile, "Are we in your way?" to which he responded, "Well, yeah." No problem, we're not needed and it takes like 7 staff members to be in the room to manage the process.

It's been a good day. Despite Ang and I not sleeping through the night for two nights (must be from breaking up the family unit... awwwww), we were both in good spirits today. Frankly, she was amazed at what a good mood I was in despite how tired I was. I told her that I left all my stress on the lake, so I predicted I would just be punchy/funny/tired today, not crabby/surly/tired, and it worked!

I knew we had a busy day ahead of us, so when I got in and saw we had another new nurse, I quickly began to give her the pep talk. She understood right away as the liver ultrasound tech was already in the room along with the Respiratory Therapist... and it was only 8 am! Turns out dialysis got delayed till 9pm tonight after we took it down at 11:30 this morning. Grrrr.... Turns out, not 1, but 2 dialysis nurses called out today, and it threw the rest of them under the bus. Whattayagonnado?

In other news, Bella's blood pressure has been continuing to wane, and after rounds, I did a little more detective work in my notebook. I found that when we first went on hydrocortisone, we were giving 10mg every 6 hours. Then, we tapered it down to 10 every 8, then 10 every 12. When she was getting 10mg every 12, it wasn't enough, so the BMT doc, Dr. Verneris, suggested that we go back to a "full stress dose." Well, in the time between when we were on 10mg every 6, and when he said, "Let's go back to a full stress dose," we got a new resident. Turns out this resident thought "full stress dose = 6 mg every 6 hours." That equals 24mg a day. Bella was on 40 mg a day. Then, the BMT doc and fellow rotated off and we ended up on 6 every 6. So, after I heard her mention this in rounds today, I told the new BMT doc about the discrepancy and she fixed it for us within minutes. Having said that, her pressures haven't exactly been stellar since, but at least she hasn't needed a saline bolus; she's got enough fluid on her already.

SO, Bella had more little chunks of skin taken out of her left thigh today... BIOPSY day! We will find out whose cells are whose soon enough! We also did a blister test to see how long it takes for Bella to form a blister. We did both these tests the day she had her first Hickman line placed... June 15 I think. Now we can compare results. Can't wait! As you can see from the two pictures at the top, there is an improvement in how her left index and middle finger have healed. We are noticing, particularly on her hands, that she is shedding off layers of old, scarred skin, and the skin that is growing underneath has a more youthful quality.

On inside, here are the numbers:

Weight: 12.5 (up from 12.2... wrong direction, Bella... think thin thoughts)
I/O: +208 (um, not so great...)
WBC: 8.2 (great)
ANC: 5.7 (great)
BILI: 1.7 (great. found out 1.5 is normal)
CSA: 293 (ooops.... wrong direction)

Finally, Ang and I actually - get this - exercised in the RMH gym together! We realized we need to keep getting our stress out through our muscles to have a chance at a good night's sleep. It was the first time I've been on a treadmill since Bella was born, and it looked it, but it's cool, first day back is always the hardest to schedule. Just get in the gym once, and the second trip is always easier (for me).

Alright, it's 10:30 and we're still hanging out with Bella; we need to get home and try that sleep thing again! Love you all for being here. Thanks again.


Fabulous NEW socks! Thanks, Sara!

13 comments:

  1. I can't win for losing. My response has not gone through twice now. UGH!
    One more try.
    I am so glad you had notes to draw on. I hope that you'll see improvement soon.

    Good job!

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  2. Jack and Molly's NanaAugust 2, 2010 at 9:04 PM

    Wow, what a difference in her little hand; that's SO good to see! I'm hoping your record-keeping pays off in Bella's blood pressure department; I just KNEW your notebook would be valuable (you should see the records I kept during my husband's lymphoma!). Details, details, details!
    Glad you got a chance for some personal "physical therapy"; it's good to use those muscles, too, especially after a brainstorming day.
    Sara has great taste in socks; I'm sure she inherited that from me.

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  3. Notes are huge! Thank God you note every day! Her hand looks beautiful..so amazing :)Her hand in itself, is a miracle! Great socks Bella...I'm so bummed that I sent you tights instead of socks...ugh...for some reason I thought they were tights and not socks :( Anyhow, I'm praying for you little dolly! Even my husband has made a habit of coming home and asking how's Bella doing? and my response is....we'll know more tonight after Tim posts the update! So know he asks me right before we go to bed, how's Bells doing? We are keeping Bella at the top of our prayer change...God is good, always...and I'm sticking to it! I'm looking forward to the test results!!!
    Sounds like you & Ang had a great time @ the gym....half the battle is getting dressed and getting there...so great job!!! Glad you're getting much needed rest...go rest up...we all have your back and are collecting prayers and sending them UP to our loving Lord who is full of love, mercy and peace.
    Goodnight Bella doll...check back in with ya tomorrow!

    *kissing your right foot...muah!*** ***kissing your left foot...muah!****

    xo,
    nicole baca & family

    ps...Christian gets excited when he see pictures of Ali...he says..."that's Ali, mommmy!"

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  4. **sorry for the typos!!

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  5. First of all, I absolutely love those new socks. Totally fabulous. And I'm so glad to see from the pics that her skin seems to be healing better. That is awesome. I'm so glad things sound like they are pretty good right now. Keep thinking positive. Stay strong. Lots of prayers still coming your way.

    Take Care,
    Amber McLaughlin,CA

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  6. Sooo awesome to see Bella's beautiful healing hand! It brought tears of joy this morning :) Great job in keeping accurate notes Tim, perhaps you should teach a class at the hospital?? prayers continuing for all of you, and the hospital staff, for more positive days, and more positive numbers. Keep the good numbers coming! And for dear Bella...beautiful baby girl, she will be well!

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  7. Nicole, tights are great too! They'll come in handy for when she's out of the hospital. We typically use tights to help keep her leg bandages in place. We were joking that Bella will need a whole new wardrobe once she's out of the hospital because nothing she came with will fit her by the time she's out.

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  8. Glad your handy dandy notebook came to the rescue! ( Can You tell we are big blues clues fans over here?).
    Bella's hands look so sweet! Glad the socks fit...and Ang, if anyone deserves a new wardrobe its Bella. Well, all of you, I suppose!

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  9. Nothing deep or spiritual to say today. Actually the complete opposite of deep and spiritual. So here goes...I can't stand The Bachelorette either! Glad to know somebody else agrees.

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

    Susan
    A friend in NC

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  10. I want you to know that I found much need strength through Bella last night. THANK YOU BELLA FOR BEING MY INSPIRATION!! Always thinking of you and praying for you sweet angel! ... ps..your hands look great!
    much love,
    Angela Ostermann

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  11. Glad you got some R&R and seem to be feeling somewhat rejuvenated :) Awwww the lake! Bella's skin is looking so much better! We'll all keep sending up prayers

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  12. Lynne, Bob, Jack and BenAugust 3, 2010 at 9:46 AM

    Beautiful socks, BEAUTIFUL hand! THAT is a miracle, as is our little Bella. Was greeted this morning with a big hug from Ali, who was asking to go in the lake before she even had breakfast. "The sun is shining, it's going to be a good day to be in the water."

    Sending continued prayers. Sleep well tonight.

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  13. I love striped socks! I've got a pair myself! Her hand looks great! Alright Bella! Go Ali cells! Brian and I loved our "unwinding" :) chat in the hall!

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