Mila’s big day (132)

I’m going to post this and then update as I get updates. Mila got to look a out the window and waved at her friends below. We feel so loved!

Mila rolled out about 730. They are going to put a little mask with gas for her to fall asleep and get her intubated and all the ivs and lines ran. They’ll call when she’s ready for surgery. Any minute now I expect. She was just happy and wiggly and alert when they rolled her out. The nurses and doctors were all commenting how adorable she is!

Update: 931am

Mila got a central line in her neck. Another in her groin. And she is successfully sedated and intubated and surgeons are scrubbing in and getting ready to go. Her vitals are all good so far.

Update: 1034am

They’ve got bypass started and have her on circulatory arrest and are just really getting started. Vitals are still good.

Update 1146am

The valve is done, and the arch repair is done, now starting on the two patches. She’s tolerating everything well so far.

Update 1244pm

All the repairs are complete. They are beginning to warm her body. Echo team on the way to check for bleeding/leaks in the valves. They’ll leave her sternum open to allow swelling to come and go, but close her skin. She will have chest tubes for draining fluids around her heart and lungs and pacing wires to help to keep her heart in rhythm and a foley Catheter to measure her urine output. When her echo is cleared, and she’s warmed completely, they will send her to recovery where she will be watched closed and vitals checked every 15 minutes for the first 4 hours. As soon as she is semi-stable, I’ll be allowed to go see her.

Update: 145pm

She is still in the OR. Her temp is good. They are still observing for bleeding. She will call me back in another hour. she got a lot of stitches and lost a lot of blood and they are going to keep an eye on her there awhile longer before sending her back to the floor. Doc should be coming to talk to us in 30-60 minutes.

415pm

I got to go see her at 4 for a little tiny bit. She’s very swollen. A LOT going on in that room. Very overwhelming. I have a million questions. They are busy taking care of her so it’s not the time the ask. 

Tony was supposed to get to go see her at 5 but something is going on so we can’t see her again. No updates from them since 5. Still several people standing outside her room and several in her room. 

6pm Tony just got to go back. I hope he has an update when he comes back. Her blood pressure is all over the place and her heart rhythm is all over the place. Trying to figure out the right meds to balance things...

‼️‼️8pm. 

I’m not really sure how to update. She’s not doing well. Haven’t been able to get her stable. Having to re-start ECMO (heart/lung machine). Not good.  Prayers are more important now than ever. ‼️‼️

❣️She is on the lung/heart machine now so her little heart can rest and let the machine do the work for awhile.  She will be on this rest period for a few days before they trial her to see if she is ready to take back on some of the work of breathing and pumping blood, keeping her blood pressures and oxygen saturation’s stable. I will start a new post tomorrow for those who’d like to stay updated. Thankyou all for your thoughts and prayers. ❣️