A new week

This week needs to be good, because I am leaving Thursday for a marathon of shows, and my heart won't be able to leave if Arden isn't doing good. Today we heard in morning rounds that her BUN and crit numbers are high (these are in relation to her kidneys.) She's been on so many diuretics for so long, stress on the kidneys isn't uncommon, but definitely not desired! As we speak, little Reagan is struggling with her kidneys with MUCH higher numbers that they were actually talking about dialysis! Pray neither of the girls get to that point!

I finally got the Dr's to pull out her OJ (the feeding tube running from her mouth to her intestins) b/c she would gag and then throw up. I wasn't too concerned about her throwing up b/c babies throw up - but it was getting to the point that it would upset her for at least a 1/2 hour while the nurses cleaned her and her bed up. She was using so much energy in the process that she wasn't gaining weight. Now she has only thrown up when the dr's increase the amount of food she is getting. She does good at 15mLs/hour but the full feeds of 27 and even just 20 make her throw up. She they've upped her calories from 24 cal/oz to 26. We'll see how she does.

She got both her central lines out which mean we can hold her, but she still has her drainage tube in which is severely irritating. So we've both held her, but she seems to do better when she is on her bed. Hold her moves her around which is good for her and gets more drainage out as well, but getting more drainage out keeps the tube in longer. This stinks b/c she is uncomfortable longer, but I tell myself that the fluid would be in her anyways, so this is just getting it out faster. I don't know if that is actually how it works, but it makes me feel better when I hold her.

My mom took Elliot yesterday so Eric and I could have some time with Lady together. Then I'll travel back to Redding for the shows on Thursday, back down here on Sunday or Monday for an event Eric and I have been asked to speak at, and back up to Redding for more shows and hopefully by the time the next weekend is up and my others shows are over, Eric will just get to bring Lady back up to Redding and Elliot and I won't have to travel back down.

Thank you for your continued prayer over health, timing, unity, finances, insurance, and whatever God is leading you to pray for. We'd love to hear what you hear back from Him on these matters and more! Thanks!

Radio Station Recording

Click the below link to hear the phone call when we won the Mercy Me Prize Pack! You'll hear us with the radio station, Renee's letter, and what Bart had to say to us. Amazing!
http://chirb.it/Bf18g4

Has it really only been four days?

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!

Quotes from Elliot

First of all, I'd like to announce Arden's successful extabation! Arden once again teamed up with God and against all odds is impressing the doctors with her breathing! Can I get a Whoop! Whoop!

I just wanted to share a few comments from Elliot today. He is such a ray of sunshine (when he isn't be a toad!) that I thought I'd share the light!

Elliot: (Out of nowhere while we are driving) Mommie, I don't want to be nice.
Me: Why not?
Elliot: b/c I've been nice all year so I don't have to be nice anymore.
Me: Well, okay. But we still need to be nice. We should always be nice to people.
Elliot: No, all the weeks I was nice so I'm all done.

Elliot: I love you all the way to the future!

Me: Pick your shirt up, we don't leave our clothes in the middle of the floor.
Elliot: Well its dirty now b/c it's on the floor so I don't want to pick it up b/c it has germs now. You can get it Mommie so I don't get germs.

Elliot: Lord Jesus, thank you for God and for Jesus. And Jesus help me to listen and respect all the years. Amen

Elliot: Can I sit on sisters bed?
Me: Not yet buddy, there are still too many tubes. You will be able to really soon though.
Elliot: But I have to sit on the bed Mommie because sister loves me.

Eric: Are you excited to go to the baseball game?
Elliot: No, I already go to one of those.
Me: but you are going to see Kelly and Ethan there.
Elliot: But I already see them so I don't want to go.
Me: Well they will be wearing different clothes, and you are wearing different clothes. So this will be different.
Elliot: (LONG PAUSE while he blank face stares at me) Okay, then I'll go.

I love my Elliot Thomas! Just thought I'd share! :)

Last night and this morning

I'm just going to copy and past from facebook so I can hurry up and get to the hospital:

10pm last night:

testing testing one two three... Arden is now on CPAP. The vent to breath for her is off and will only turn back on if she doesn't breath on her own. She is being tested over the next hour to see how she tollerates the work before tomorrow's possible extabation. Praying for her to do well! Go God Go! Go Arden Go!

midnight:

According to her nurse: "Arden did very good" Yeah! For a whole hour she was breathing on her own and kept all her numbers where they wanted them. She might do another test in the morning around 8 the nurse guessed. The Dr's tonight seemed wary about extabating tomorrow morning but the day shift seemed more confident.... We'll see what they say when they get there tomorrow and reevaluate. :)

This morning:

She's just about to finish her second test now and is still doing very good. Our nurse is going to take a few more blood gases to see how her levels are doing and Dr's are thinking they will extabate before 12. She is off the fentanyl drip so she will be more alert and has started withdrawal meds. Could today be the day?

Keep up the prayers! Thanks so much!

Are you kidding me?!

So I'm listening to morning rounds today and they are summing where Arden is at and move on tot talking about the goals for the day and suddenly they talk about wanting to extabate her. Last we heard it would probably be sometime at the end of the week... and they are talking about weening her today and getting her extabated tomorrow morning! OMG! Seriously!? I'm so excited and kinda nervous and anxious and terrified at the same time. Getting extabated would be a huge step forward. Other steps forward are the drainage tubes that were removed today - one b/c it wasn't putting out anything and the other b/c the insertion site was, well, gross. :) So I'm praying that either the tube would have stopped draining today anyway or if there is still some fluid, the body reabsorbs it so they don't have to put in another drainage tube. I'm also praying for the drainage tube sites b/c they were all red and irritated and she still has one more tube in. So back to the breathing, she is being weened on her PEEP (basically the pressure support of the breaths) one every hour. She was at 8 today and they want her at 6 tonight so they can do a trial run of her breathing on her own around midnight. Our PEEP is around 5-6 so she is already at a low level, but the last time they tried all her numbers looked good but she just couldn't handle it. They are hoping with her sats better this time she will do better. Pray for a successful practice tonight and extabation tomorrow!

Reagan continues to hit bumps in the road. Not only was she diagnosed with H flu (not H1N1) a few days ago, she was diagnosed with another type of flu today. Check out http://reflectionsofreagan.blogspot.com/ for details. Her Daddy and Brother had to go back home today, so it's just her Mommie, Mimi, and PawPaw her with her. We know - a family split up is never fun. Be praying for each of them too please.

12 hours later

in today's rounds I found out Arden didn't do well with last night's attempts to ween her form the ventilator. Her upper right lung flooded a bit so they are now thinking she'll need more time and might extabate middle of next week. Her right foot is warmer, so that means better profusion and her EKGs are looking ok. Elliot is having a rough morning though, I think he's reaching the end of this rope with RMH and the hospital. :(