Wednesday, September 8, 2010

September 8: Day +68

Heaveno! (see last night for explanation if you missed it)

Anyone have any dramamine? I am SEA SICK from the roller coaster ride we were on today!


Okay, how to recount the day...

We started off with a pressure support trial at 8:30 am right after rounds. We did one yesterday and Bella did extremely well. This is when they have Bella initiate all her own breaths for an hour and see how she does. This morning, right as we were going on, she started to fall asleep (the best way I can explain), and I had to keep stimulating her to keep awake and alert enough to keep her breaths going faster than 15 per minute. We did wound care, physical therapy, singing, anything I could think of to keep her slightly agitated and in gear. Every time I took a break, within 10 seconds her breathing rate dropped below the minimum acceptable.

1 long hour later, we were done, and so was Bella. She was snoozing at this point. So much so that the nurse didn't even give her her scheduled sedation meds. Bella didn't need 'em; she was OUT! Problem was, she was so cozy, her breathing rate never really bounced back, and by 10:30, her blood pressure was in the toilet and her CVP (central venous pressure - basically measures volume in the vasculature) was a 4. She likes it to be 8-10. So, in went the fluids, down went the sedatives, up went the presser. Well, she really didn't respond to much, so Sam CRANKED up her phenylephrine, stopped her precedex completely, added vasopressin, all within about a 15 minute span. Well, about a half hour after that, WOOSH! It all hit.

I left to go to the restroom while the alarm was beeping for low blood pressure. When I returned, it was beeping for HIGH blood pressure. Seriously. It was like 60/40 when I left, and when I walked back in the room it was 110/80. Crazy, right? So, they cut the phenyl a bit, and added half the precedex back to the mix. Now her pressures are quite generous, but no one is really pulling off fluid or weaning back down on the pressers. So, if THIS amount is okay, why haven't we been rocking this level all week? We've been scraping along with barely acceptable pressures, and now we have head room to spare. Go figure.

Incidentally, I have a feeling we'll do at least one pressure support tomorrow. They wanted to do 3 today, but I had to draw the line. We pushed too hard too fast a month ago and look where it got us? Why push now when Bella has twice the atrophy and 3 kilos of water to lift up and down with every breath?

In addition to all this yo-yoing, yesterday, Sam postponed Bella's trach surgery till Tuesday. This morning, he said they would probably extubate her on Monday. Folks, those are two VERY different plans. See where I'm going with this roller coaster analogy? He said they would do it sooner except the weekend is coming, and they'd rather do it when everyone who is anyone is on at the same time (read: weekdays).

So... I don't know what to call today, a win, a loss, a draw. I just hope tomorrow is a little less exciting. I'm beat. Gonna hit the sack now. Thanks for being here.

Bella was looking past me... at what, you ask?...

At her butterfly wings and balloon from Ali! (picture represents Bella's view; I took it next to her cheek to see what she sees...)

Breanna was nice enough to volunteer to get one of us together...


  1. Poor baby girl...hang in there, Bella.
    Poor mommy and daddy....hang in there. I love seeing those eyes....and that Sweet little nose.
    by the way...I have to redo my Choc page. I needed to register as a any orange county readers who want to walk...give me a few days and Ill ask Tim (nicely) to repost the link! Thanks! It will be fun meeting some of you!

  2. You're doing great Bella! Keep going love bug! Praying for you always...sleep tight and I pray the Lord protect you and stregthen you.
    Good night sweet pea!

  3. ps...Sara, I received your email...thank you!! I will reply shortly :)

  4. Jack and Molly's NanaSeptember 8, 2010 at 9:08 PM

    It's only Wednesday and you've already had quite a full week! I'm so happy to see Bella's beautiful face again. Even happier to read that your team is functioning so well together, and that you're being heard and that your views are being respected. Roller-coaster indeed!

  5. The nice thing about roller coasters is that there are parts of the ride that allow you to catch your breath, it is during those moments that you are able to look around and see the view.

    All of you are never far from my thoughts.

  6. Hang in there, Dad! Keeping you all close in thought and as always...

    Praying for healing,

    A friend in NC

  7. Hi Tim: Love the picture of you and beautiful Bella.
    Having an EB baby = fasten your seat belts, it's going to be a bumpy ride.
    Still praying for the whole family. Hang in there guys. Bella knows that her family loves her and so many people are praying for her. Love you guys. Love and peace. Love Leah's Nana

  8. Great picture of you and Bella! I love that you are so intuned and took a picture of what Bella was looking at - your a great dad!

    Praying for Bella to keep invhing forward - you can do it Bella! Praying for Dad, Mom & Ali to hang on during this ride!

    Tina and family in NJ

  9. A poem for Bella

    There is a young angel called, BELLA
    Her Dad is one lucky Fella.

    Her Mum and big sister are so lucky too....
    And the Family stick together,
    Like a big pot of glue.

    The poor Little darling is not feeling so well
    But the doctors and nurses are treating her swell.

    Her Family and friends give her sooo much love
    Not to mention a whole lot, from the ONE above.

    Ali, her sister is so brave and strong.,
    Backwards and forwards she skips along.
    Singing to Bella and giving her hugs
    So Little Bella grows stronger, and needs less drugs.

    From London we send you this little poem
    And can't wait for the day that Bella goes home.

    Lots of love from Lolly Adamopoulos

  10. many prayers coming your way from aunt mby's neighborhood!
    winston-salem, nc

  11. What a sweet poem from England! LOVE LOVE LOVE the picture of you and Bella! We need to see lots of those! Still praying everyday!
    Love you all,
    The Vanderbooms

  12. That roller coaster you are on sounds tiring! The good thing about a roller coaster is that there are ups - that is much better than a loooong downhill slide. :) I love seeing Bella's eyes opens - check out those eyebrows!