Sunday/Monday Days 5 & 6

Yesterday was another day of ups and downs, but definitely a few more good moments! We are trying to find a balance between controlling her pain but also not giving her too much oxycodone which makes other things like going to the bathroom hard...She is being so tough getting by on Tylenol, IB Profen and only using the Oxycodone when she's really hurting. The problem is that by the time she's really hurting, it takes a while for the nurse to order the med, get it from pharmacy and the allow it time to work. Yesterday morning she had severe pain on her right side... (like screaming, nausea, trouble breathing pain) I'm pretty sure it's a combination of surgery, chest tubes poking her and not going to the 'bathroom' since last Monday. The Oxycodone is so needed for these times of pain, but also continues the cycle of no digestive movement and more nausea.

We loaded her up with pain meds and let her sleep, which gave her a few hours of relief yesterday afternoon just in time for a few visitors. She really enjoys having family/friends stop by for a few minutes but is usually pretty worn out from the excitement. She got out of bed for the first time Saturday night and took a few steps! Then yesterday we tried to get her into the chair 3-4 times and walking a few steps 3-4 times. Walking requires oxygen tanks, iv management, chest tube boxes/lines, etc... so it's quite the production with 3 people helping her along. I can't imagine how painful it is to walk with those tubes going inches into her chest but she's being such a trooper!

We had a late night last night after an evening nap so we didn't settle in until midnight. She's still getting meds every 2 hours and vitals every 4 which makes sleeping for a long period of time really hard but we're working on it! This morning she had 5am xrays again which means a wheelchair ride from the 6th floor across the hospital to the 1st floor and then getting up and down and back in her chair. Then labs came in after to do her draw for rounds... We got her settled back to sleep around 8:30am and she's still sleeping now at almost 11!

Trent and I take turns sneaking out for a quick shower each day, and then for food when we can. It's so hard to leave her because her pain changes quickly and decisions are made with the nurses and Dr.'s at random times. I'm going to try and get outside for a few minutes sometime today for some fresh air- I haven't seen the sun since wed. and know it will be good for me. I can't wait to be able to wheel Teag outside for a few minutes soon. She's pretty tired of staring at our tiny half of the hospital room!

Our goals for today are to get Teag up and moving as much as possible, to get her to eat something (she hasn't eaten much of anything since pre-op on Tuesday but isn't hungry because she can't go to the bathroom), to help her go to the bathroom! (we're using essential oils, warm blankets, miralax and dulcosate to help things along- fingers crossed), and to control her pain especially on her right side without too many narcotics...There's no talk of removing her chest tubes yet because she really isn't eating much yet and is still draining. She's also still very oxygen dependent with sats dropping into the 60s still on room air. We've switched to 'blow by' to give her nose a break from the mask/cannula so we have to keep the tube aimed at her face at all times which is challenging during restless sleep but much better for her nose! We called the pink blanket wrapped blow by bag her 'air baby' and she thinks that's pretty funny!

Her first walk the other day- so painful!

 A visit from Nana yesterday brought a few smiles!

 Trying to use her lungs during a 'good moment'- chewing gum is one of her favorite things to do!

 Such a sweet moment last night! Her nurse asked if she wanted to listen to her new heart sounds. Now that her anatomy has been changed again, her heart sounds really different! Teag loved hearing her precious heartbeat (then listened to mine and daddy's too!)

 On a walk yesterday- getting stronger and going a few steps farther!

 Her fan club from yesterday- Uncle Cayle (wig), Nana, Uncle Justin, Mom and Dad. We made a deal that if she walked a certain distance then uncle Cayle had to wear the princess wig in the hallway!

 Each day is slowly getting better and better, I just didn't anticipate how hard (and painful) this recovery really would be for her- especially after the extra surgery. We are seeing little glimpses of our sweet girl's happy self each day and pray for more and more!

We are getting by entertaining ourselves with memes about hospital life. The other day when they talked about moving us to the floor from our fancy private ICU room, this is about how we felt. :)