So yesterday I wrote on Instagram (@kierrai) with great excitement that we were extubating today, however in true hospital fashion, that decision was changed within hours of me posting that, and we're now looking at a fourth surgery, and one step closer a tracheotomy. It's making me so superstitious, and afraid that if I post good news, the opposite will happen, and for once I would like to post about making some positive and significant progress. It's definitely a little heartbreaking for myself writing yet ANOTHER update like this, and I just wish Evanna would get a break.
On Sunday Dr. Ryerson came on (we LOVE her), which I was glad to see as she likes to get things done. The one annoying thing about Christmas in the hospital, is that nothing really happens as everyone is on holidays, and everything kind of slows to almost a complete halt. Yes, it's good to have "resting" days for Evanna, as that's the best thing for the body, but it makes my impatient self go a little crazy.
We turned down Evanna's PEEP to 8 on Sunday, and for the first 24 hours, she seemed to be handling it okay. Then on Monday morning we noticed her "work of breathing" was increased and you could tell she was having a tough time. We're also having a tough time figuring out why Evanna continues to have an elevated heart rate and temperature. Blood cultures and a nasal swab taken over Christmas all came back negative, and though we initially chalked it up to withdrawals (as Dr. Ryerson made some changes to her medications), we no longer believe that to be the case. So at lunch time on Monday, Evanna's PEEP was turned back up to 10, and the extubation plan was scrapped.
Before the holidays Dr. Rebeyka mentioned that he had one more trick up his sleeve that he would like to try surgically to see if we can extubate Evanna, so we're basically trying to figure out if that's the direction to go in. Tomorrow (Wednesday), Evanna will be having another bedside bronchoscopy (it's a little less invasive then the rigid bronchoscopy done down in the OR), and another CT Angiogram to see if they can find any more areas of compression. After that we'll talk to Dr. Rebeyka (who is currently away on holidays and will be back next week, but they have emailed him), and see what he decides as the best course of action.
It's been a really hard day for me emotionally. They re-cultured Evanna (both blood and ET tube), to see if another infection is to blame for the higher heart rate and temperature, but other than that, it has been a quiet day. I was so hoping to extubate Evanna and have it be successful, but the fact that we didn't even get a chance to extubate her leaves me heartbroken. I definitely did a little retail therapy this afternoon, and I'm looking forward to tomorrow, as it will be a new day.
Evanna is still doing well, and we celebrated her 8 month "birthday" yesterday. The nurses just absolutely love her, and think she's just the cutest thing ever.
I'll update when we know the next step - and again, thank you for following along and your continued support.
xo The Irvine Family