Hi there.....yes, it is a post from Suzie....finally! Well, we got in last night around 2am because Lindsay spiked a fever. Still not sure why but we were very concerned but relieved when the blood tests came back fine and lactate level was fine as well. We were concerned with that level and insisted that they do a blood gas. The last time that she had blood infection, the lactate level was 11 and then up to 19(I think) and it was then that she had to be re-intibated. This time it came back at only 1.2, so that is a HUGE relief. Normal level is to stay under 2.2 The troublesome part of this is that she is already on some powerful antibiotics and infection would be pretty uncommon. So, the mystery continues...........She has also been throwing up a little while after she eats. So, after a few times of that, we recommended that because of her reflux, that they switch her back to the Enfamil AR which she was on prior to all of her last operations. Seems to have worked because she hasn't thrown up since!! WHOO HOO!!
We still haven't spoken to the transplant doctor but we know that she is booked for the antibody reducing drug, rituximab, sometime this week. I have pasted a link so that all of you can read about what it does for pre-transplant patients. Basically, this form of chemo drug will reduce the antibodies in the body to help prevent rejection after the transplant. http://www.circ.ahajournals.org/cgi/content/full/116/11_suppl/I-172
After all of the commotion last night, Lindsay ate just over 90 cc's IN A BOTTLE!!! and then straight to sleep. This was also very re-assuring because she hasn't really slept well at all in the last 48 hours. Just very fidgety and acting like she was uncomfortable. Of course we had all kinds of doctors on her and we were pretty certain that she had bought herself back into the PCTU. Actually, we wouldn't have been shocked of that is what we had to do. I really think she needs that one on one with the nurses but we know that they will send her back if they think that is necessary. So, off to hold and feed her again!!!!!!! Enjoy the new photos........
Love to you!
Well, Suzie my dear...if you are reading studies like the one in your entry to help you make your decisions, I am IN AWE of you!!! Well, I already am, but wow...what a lot to absorb! I read every word...twice!
As for the pictures...wow, she looks so "normal"...can you imagine smiling after all she's been through? And look at the teeth...I guess if they have been cracking your chest open and giving you morphine...there wouldn't be much complaining about teething would there?!! Are there any coming in on top? Is there any chance that is what has made her uncomfortable recently?
Not that you need a cheerleader, but good job on the Enfamil...even with all that is going on with Lindsay medically, you are her mom and you know her best!!
Will keep stalking and praying,
She looks so great for everything she's been through! What an adorable smile. Hope you're getting lots of cuddle time and her fussiness resolves itself with no more fevers!!! Praying for you guys-
Lots of love,
I just love the picture of her smiling...she's just absolutely beautiful! So happy she is resting comfortably...she looks so peaceful in her sleep :)
Praying for continued progress for the little girl!!!
Thanks for adding the link...it was very informative...although I had to read it more than once to understand it all!!!!!
Thanks for the info on the drug... I suspect that Owen may need something as well... so ANY and ALL info is wondeful!!
Lindsay looks so great and happy! I hope that she continues to do well. What a little ROCK STAR for drinking SO much from her bottle.
Can't wait to hear what the transplant docs have to say.
Prayers from AZ
oh, she looks so happy in that one picture! nice to see her smiling! I bet Grandma never wanted to let go of her! thanks for the update. It's funny you talked about the chemo, I just asked my husband yesterday why she would have to get chemo. I didn't quite understand what it did. It's nice that you take the time to really explain these things to those of us who are not RN's!
hug her tight!
our thoughts are with you and your family!
I am going to have to agree with everyone else, it is so great to see little Lindsay with a smile on her face, and a teddy bear in her arm. Her smile made me smile for sure! Thanks for sharing these pics and all the wonderful information.
As always our hearts are with you!
She looks so sweet and special in her jammies. How comfy and cozy for these snowy days. Praying she is continuing to make progress. No more setbacks! Take Care!
Travis, Jill & Reagan
Oops...maybe those aren't teeth...maybe it's the lighting? But that could still be a reason for her to be fussy...teething?
Love and hugs to you all... :)
As usual, Lindsay is looking "Pretty as a Princess". She is just too cute in her jammies. I can't resist kiddies in their jammies! Thank you guys so much for updating us. It's so nice to open up the blog and see new pics of the Princess. It surely brightens my day!
Maggie & family
Ok- sorry... answered my question. hospital brain!
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