Friday, December 3, 2010

Trial run

Well, today turned out to be a big day for Keegan. 
  • We turned off his oxygen last night before bed, and although his oxygen saturations are not all the way back to normal, he has maintained enough that we haven't yet turned it back on. 
  • AND we increased his dialysis last night but only ran it for 12 hours.  He's been off it since right before lunch!  We will check levels again tomorrow, but this is a big step!  The sooner we find his "happy place" on dialysis, the better.  They warned us this morning that he could get very swollen again through the night because up until now, his kidneys have been only processing a small fraction of the fluid we've given him.  The optimistic part of me SO wished that wouldn't happen.  Unfortunately, it has.  He gained 1/2 pound in fluid from noon to 9pm.  His kidneys did not even clear the little amount of water he has had today, yet alone the TPN, tube feeds, albumin, meds, or leftover fill from dialysis.  As he's gotten more swollen, his breathing has also gotten more shallow.  If it gets much worse, we'll probably have to turn his oxygen back on.
  • He is still hemolyzing his red blood cells, and frankly, he needs blood pretty badly right now.  Unfortunately, we had to prioritize what we infused today since we stopped dialysis.  He needed albumin more today, so we chose to run that in hopes that tomorrow we will be able to give him another blood transfusion.
  • We are almost to half volume of his normal tube feeds, and he seems to be handling it just fine.  At the rate we are going, he should be at 100% in another week.
  • He has been in a pretty good mood today.  He is sitting up supported by pillows and playing with cars on the tray table.  He isn't too intrested in standing up yet, but he will if pressed.  Amid his protests, we loaded him up in the wagon this afternoon to go get some fresh air and see the Christmas tree outside.  He was ok with it once we got outside and took a few steps before asking to be picked up.  It's mainly because (1) he feels crummy, (2) his poor feet, especially his arches, are swollen, and (3) he hasn't been out of bed in a week.  If we can give him a break off of dialysis for at least a little bit of time each day, then we can hopefully get him moving out of the room and avoid having to be seen by physical therapy. 
Keegan and Daddy at the hospital Christmas tree

The tree is beautiful this year. 
We missed the big lighting ceremony on Monday because Keegan was so critical.

Audrey came up to visit today.  Oh, how she missed her big brother!  She was so happy to sit on the bed and play with him this afternoon (although he tried to ignore her as best as he could).  I was able to rock her for a brief nap before my mom had to take her home.  It felt so good to snuggle up with her, but it almost made saying goodbye harder.  She is a trooper, and I know she's having a grand ol' time with her grandparents.  I feel like we're all surviving this inpatient stay fairly well while being separated.  It should be interesting to see how it goes as she gets older.

"Is it really you, bubba?"

Giving kisses or telling secrets?  Not sure, but you can tell she just adores him.

A little brother-sister playtime



Your prayers are making all the difference.  Thank you so much.  We are certainly encouraged by an uneventful day with a few more steps in the right direction.  Praying for a weekend with more of the same.

**By the way, don't forget the Children's Medical Center Holiday Parade is tomorrow morning at 10am!!  You can watch it on Channel 8 locally and follow tweets live from the parade with the hashtag #cmchp.

4 comments:

Ashley & Chuck said...

I'm so thankful that Keegan is doing better! You all will figure out the best solution for him soon. I love the picture of Audrey whispering in Keegan's ear! I know you were glad to see her. Know that we are continuing to think and pray for you all everyday!

Jennifer said...

So happy to hear he's doing better. I love the pics with Audrey!!! So precious!!! I'm so glad she was able to see her brother. We have been so focused on him that I forget it's probably hard on that sweet girl too! :) And even if he was trying to ignore her, it was probably good for Keegan to see his sister!!

Kelley Loredo said...

Oh how we are missing seeing you guys! Love Keegan's striped Christmas PJs! He is looking so much better in the pics - and love the ones with Audrey today! Big hugs - see you soon...

Love,
Kelley

Ben and Abby said...

So cute seeing Brother and Sister back together. :) :) Love it!! Lainey told me tonight that the coyote "maybe go night-night in Maddie's yard." Hm. We miss y'all!!