Saturday- Ups and Downs

Late last night Teagan was moved from the Cardiac ICU to the Cariac and General Surgery floor. Once a patient here is deemed 'ready', they have to move you once a bed opens up even if its late.This is a good step in the right direction but we were exhausted and moving our entire room and poor Teag at midnight wasn't ideal. On the 'floor' all of the rooms are shared and the space is much, much smaller with less nursing attention. I was anxious about Teag's care since she is still pretty fragile and taking 10 medications at various hours day and night. None of us slept much because of our late arrival and our roommate who was really hurting from an operation earlier yesterday and had alarms, bells and crying happening all night. We all felt really bad for him (also 7yrs. old like Teag) but we could have used some sleep!

Also when you're on the 'floor' they like to do xrays and labs between 4am-5am to have the results ready by morning rounds. This meant waking Teag up and trying to move her sore body to a wheel chair with all her tubes/lines and wheeling her across the hospital in the bright lights after only and hour of good sleep. We finally got her settled back in her bed, when the lab tech came in to draw her labs for the day. Teag was such a trooper but understandably upset about the pokes and early morning interruptions...

We are 3 days out from her first surgery and the soreness/pain is really setting in. Teag was just tired and sore today, so no smiles or perky chats. This is totally expected but also sad to see. Baby steps forward and back... The Dr.'s really need Teag to get out of bed, sit in her chair and try and walk and have made an aggressive schedule for her to do so. She's really, really oxygen dependent and they're hoping that once she's walking this will improve. Right now if she takes off her oxygen, her sats drop into the 60s and 50s pretty quickly which I scary to see. The nasal cannula has destroyed her nose with the constant dry air and the last two days she's had constant nose bleeds and needed to wear the full mask instead. We are working on a cool mist in her mask, but they can't offer the same in her cannula. She can't eat, drink or talk well with the mask so today has been tricky.

We plan on helping her walk a few steps in a big and use her lungs a bit more. Then hopefully we'll all get our first night of more than 1 hour of sleep at a time! Trent and I are taking turns sleeping bedside in a chair and on the couch by the window since we still have not received a room at the Ronald McDonald house. This is a busy time for the hospital and there just isn't room for us yet. My daily goal has been a quick shower upstairs in the shared parent shower area. It's amazing what a few minutes of hot water does for the spirit! We are confident that tomorrow will be a better day for Teag and that her body just needs a bit more time to rest after two days of surgery in a row!

This has been our day- tired and a bit sad. :(

 Teag did get to try some real food today for the first time since Tuesday! We ordered her a few of her favs (chicken and noodles, fries and strawberries) but could only get her to eat a few bites. Again, baby steps...

 Little brother Bode has been really sick since Monday (an added source of stress when I couldn't be with him)  but is feeling much better today! He did get stung by a bee earlier (poor guy can't catch a break!) But I was sent this pic of this from this afternoon looking like himself, finally! :)