T-I-R-E-D.
Long day with a new nurse who was sighing all day with how hard it was to stay on top of Bella's care today. She was breakin' a sweat today, I'll tell ya! It was dressing change day, so the room is a little more active since that is a process that inevitably gets interrupted repeatedly by the steady stream of EVERYONE that comes through on a typical weekday in the PICU.
We really had to work to keep Bella's breathing under control today. She is on a ventilator, and this ventilator is one smart cookie. It can sense so many incredibly subtle changes, that on the one hand, it allows the caregiver to really know what's going on with Bella's breathing, but on the other hand, is ALL OVER YOU if any little thing is outta whack. This is a good thing, don't get me wrong. It's just that today, we couldn't seem to get her peak pressures under control. I'll try to explain what that even means tomorrow.
Also, Bella's back has lots of little new tears in the skin which are no doubt from having to lift her butt to change her diaper. Changing a diaper while on paralytics is challenging because her legs are just wet noodles and don't offer ANY resistance when you lift them up. It's kind of a pain in the butt... I can't believe I just said that... seriously though. She also has some small tears in her butt crack, too, making diapering now a stress filled event.
Her wounds overall look pretty good and are behaving (knock on wood) much better than I expected. Her mouth however is where the damage is currently taking place. The mucositis causes open mouth sores around this point in transplantation, and the amount of thick blood they are suctioning every hour out of her mouth is really gross. Thank GOD she is out cold for all of this. I cannot even fathom the agony we would all be in trying to suction all that blood.
Also, it looks like we are going to have to put a G/J tube in on Thursday when they place a new Hickman Line. The G/J tube adds a component to tube feeding that allows Bella to receive her formula right into her intestines. Her G tube presently dumps the food into her stomach, but due to all the meds, Bella's stomach isn't moving much of anything through right now, and it is backing up. She's on a slow formula drip right now, and it's just not going through, which means it is taking longer for several oral meds to be absorbed as well. So, new and improved belly tube!
Last and not least, Bella's numbers were GREAT today. The first number is target, the second is actual:
Heart Rate: 150 / 140-160
Creatinine: .58 / .68
BUN: >100 / 83
CSA: 250 / 248!
WBC: 1,100!
Yay!
That' it for now, been trying to finish and keep falling asleep. More tomorrow!
Keep on keeping on! Looking forward to being with you all tomorrow!
ReplyDeleteLove,Mom
It was so nice to see Ali's sweet face in that first picture! We are constantly praying for you all and for sweet Bella! We are checking in daily and you and your family fill my thoughts each night as I lay down and in the morning when I rise.
ReplyDeleteLove,
Shalimar (Sara Cooper's friend)
Wow! Another good day; I'm so happy for you all. And with another grandmother on hand, things can't help but look brighter. There's something about having family around, in good times AND in bad times that just somehow lightens the load; I hope that's your experience, too.
ReplyDeleteLOVE the Ali pictures, too! Thanks for being so inspirational for everyone who follows your blog.
You must be thrilled with those great numbers. So sorry that her back and butt are getting worse. Changing her must be so much fun. I remember when Leah was in the hospital, Meg had the same problems.
ReplyDeleteHang in there guys. We all love your family and are praying so hard for beautiful Bella. Love the picture of Ali, she is so cute!!! God Is Good All The Time. Love Leah's Nana
What wonderful news! May Bella's counts continue to improve...still praying for Bella every day...beautiful baby girl, be well.
ReplyDeleteLOVE those numbers! And I love that last picture of Ali touching Bella's hand.
ReplyDeleteHere's praying that today goes smooth and easy!
AWESOME numbers! That is fantastic! Her poor little back though... :-(. This is a comment I wanted to say earlier but haven't had the time to post - I am SO THANKFUL that Bella has a daddy so willing to whatever it takes for his little girl. Even though she's out (hallelujah) she must know how loved she is by her family. You and Ang and Ali are so inspirational! Thank you for sharing your story with us. (Also, I NEED to know where you guys buy Bella's socks! I don't even have kids yet and I want some in case I have a little girl!)
ReplyDeleteIt is very visible through your writing, how tired you (all) must be feeling. When Matilde was born, she stayed 19 days in the NICU and I stood with her (almost) 24/7. I can really understand how all of this can be so overwhelming to the primary caregiver.
ReplyDeleteBut keep focus on the incredible good NUMBERS, specially the WBC!
And make sure you get out of the hospital, even for an hour or two, to recharge your batteries!
Very best,
Carla and Matilde
Great news on the WBC!! Ali you have such a beautiful smile. The first picture she looks so much like her Mommy. Angie you look great, you're an amazing Mom. Tim, I can't thank you enough for the updates, but don't forget about yourself and sleep. Best wishes. Heidi
ReplyDelete1,100!! Woo hoooooooo! Continuing to send prayers and getting excited to have you guys at our little compound up here. Let us know what you need.
ReplyDeleteThe socks were a gift from my brother and his wife for Bella's b-day. Here's where you can find them online.
ReplyDeletehttp://www.meinmindfootwear.com/GirlsFootwear.html
Angelique
Oh my gosh!! For a second I thought the exclimation point was a one when you listed her CSA! I thought I read, "2,481" for her level! It took me a second, but I'm with ya now! So....AMAZING numbers!!!! Good work Bella! I'm jealous! I'm so happy for you guys though! That's awesome! Sounds like this time next week when the swelling goes down she'll be bustin' out of this joint! Onward to 5D!! :)
ReplyDeleteWhat a cute big sister.
ReplyDelete