I feel like it's been forever since I posted last, but it's just been four days - crazy! I checked the news today to make sure we weren't in the middle of world war 3, we aren't. Even if we were, I'm pretty sure we wouldn't know. I can't explain the bizarre vortex time becomes when your life is the RMH and LPCH.
I was taking a break from updates b/c the last few days have had so many changes I didn't want to just be confusing. We are used to the constant change (kinda) but we know it can be complicated to read about.
So in summary, Arden is extabated. Victory! However we continue to struggle with her right upper lung and any weening that is done to get her off the high flow nasal cannula is reversed. Today I heard we successfully weened two liters and she is only at 6 now. Victory! Sigh, okay, so unfortunately we also lost her one PIV and her Arterial Line. She now only has her two central lines that go directly to her heart. These are the lines preventing us from holding her. They want to take them out Monday, which means we can hold her then, but it will leave her with no access so they want to take her to Cath and put a PICC line in. They tried looking at the bedside but her veins are just too small and too deep... and going to cath usually meaning getting intabated. Defeat. Big big defeat. The Dr. said she would pass the word to the respiratory team to do all they can to "bag her" for the procedure instead of intabating her, but we'll see how it goes. If they have to do that, we can't hold her until she is re-extabated... and that took weeks last time. Dr. Wright told us the day that she couldn't estimate how long we would be here b/c it's all up to Arden, but she said no less than two weeks. I've been praying over getting home by June, so it was defeating to hear that as well. We still don't know what will happen between now and June 2 (something important will happen that day, I can feel it) so I continue in prayer.
A pulminologist came in to see Arden finally b/c our heart team felt she had developed some sort of lung disease, but she couldn't say anything conclusive. She wanted to run two tests that "might" help, both requiring intabation. I said no. I didn't want her back on the vent for "might". If she ends up getting intabated in cath, we'll probably do one them, but well see. Her lungs as of today looked okay, so we don't want to disturb anything if they are healing.
She's also struggled with fevers, but I think it's b/c nurses think she's cold and cover her up... she's a little heater though and covers make her sweat. So I always rip them off when I get to the hospital and any "fever" she had goes away. :)
So all in all: today we seem to be okay. Prayer requests: Arden's healing. Elliot's pent up energy. Eric's cabin fever. My job... did we tell you? I quit Gymboree. I was supposed to be back at work this last week and there was just no having that. So Eric and I decided to step out on faith. And of course, we've continued to be taken care of financially! Our landlord even offered last months rent free and the next two months at 1/2 off! Plus, the jewelry business has been great. I'm looking at it as my full time job now, so with renewed gusto, I'm calling people, booking shows, talking about the business, and selling some fabulous pieces of jewelry! Interested in the jewelry, a show, the business?... let me know! :)
Thanks for your support - once again. I keep wanting to write a huge thank you note to everyone, but we've been SO blessed by SO many people, I'm terrified I'll forget someone. I'll suck it up and do it soon. Until then, thanks.
OH! HOW COULD I FORGET! Speaking of getting blessed... did I mention that Eric and I won a radio contest?!?! Seriously! Renee entered for us and we won! We are still in shock! We won a complete music library of Eric's favorite band, along with a bunch of other great things from the band including a personal word of encouragement and prayer from the lead singer of the band! Eric and I were in tears! So amazing! So encouraging! God is SO creative in how he loves us!