Off the Vent!

Seraph is on bi pap tonight. I know it looks silly, but it's sooooo much better than having a tube down her throat. They extubated her successfully. She was on high-flow oxygen for about an hour. Her blood gases came back a little lower than we wanted so they put her on bi pap to assist her breathing. It's more helpful than highflow and less invasive than the vent..

I thought she'd just tug/push it off. Nope. It took time, but she figured out how to sneak a few fingers into her mouth. She actually likes feeling the bottom of the mask with her tongue and sucking on it.

Her sweet cousin came to visit in the PICU. Seraph LOVES her cousin. She smiled and stuck her tongue out and kicked her happy feet. Her smile was rain on the desert. I didn't expect her to be happy so quickly after extubation.

Hopefully she'll do well over night. Then they can restart her feeds and start weaning her oxygen needs down so she can come home :)

Homecoming is still a ways off, but today was a HUGE step in the right direction. We love you, Seraph. Thanks to everyone for your prayers and support.

/happy mommy

Sort of good news

They changed the settings on Seraph's vent. Instead of watching the pressures now they're watching the volume of air the vent gives her. This makes her do more of the work which gives her breathing muscles some much needed exercise. Different people do better with different settings. It seems Seraph does better with volume than pressure right now. This change is a good thing.

They also increased her oral narcotics. She still has trouble being calm when she comes off her sedation and muscle relaxants. The new idea is that with more narcotics and less muscle relaxants, she'll do better on the vent wean because she won't care as much about all the things poking her but will still be able to move. I don't know if this is a good thing or not. But, it seems better than rousing her, wondering why she's so agitated and then sedating her again and then wondering why she's so relaxed that she doesn't feel like breathing on her own.

She'll spend all of today getting used to her new balance of meds and resting.

Tomorrow they'll let her have a spontaneous trial to see if she's ready to be extubated.

In your Prayers...

Thank you for keeping Seraph in your prayers.  We are praying for something very specific today--that Seraph is able to come off the vent today or tomorrow.

So here's the problem.  She loves to move around.  All that physical therapy strengthened the muscles for rolling and grabbing and pulling out IV's and tubes.  They have to keep her sedated and on a heavy muscle relaxant to keep her from pulling out lines and tubes.  That same muscle relaxant is working too well on the muscles she uses to breath.

When they try to wean her off the vent (that's breathing for her right now), they turn down the muscle relaxant and she starts thrashing around and pulling on anything she can get her hands on (which is pretty much everything).  She does this BEFORE (or maybe instead of) trying to breath on her own.

This morning they switched her to a new muscle relaxant that should keep her drowsy without inhibiting her ability to breath on her own.  They have to wait for the other drug to clear out of her system.  So, later today they'll turn down the drugs and the vent for a spontaneous breathing trial.  (The vent lets her try to breath on her own, but breaths for her if she doesn't breath well enough on her own.)  If she does well, she'll come off the vent.

If she doesn't do well, the doctors are getting very close to the point where they'll consider her progress stalled.....the point where they'll stop feeling like she CAN progress.  They're already a little baffled by how well she's done since January.  They want her to do well, but it makes more sense to them for her to do poorly.

Mom and Dad have not given up hope.  Seraph has had so many prayers and positive blessings.  Deep down, I really feel like she's going to be OK.  But, it's also important that her doctors don't give up hope either.  So, that's why we're praying that she'll come off the vent today or tomorrow.

Plus, having the vent off today would be a pretty great birthday present for her :)

Please pray for my little girl - I'll update you when I find out more.

Thanks.

Summertime!!

I love this beach ball sprinkler!! Sexy Haqon picked it up - $13 at Walmart. It's for ages 1.5+

Angel and Finch scream when the water sprays them. But the rest of the family loves it. We had a huge water fight with our cousin. You can kick it or aim it or throw it.

Next time we might try swimsuits :P We took a walk in the sunshine after to help dry out. Soooo fun. Come on over if you get too hot and wanna play in the water ;)

...Not Again....

They've put Seraph on Lovenox again for clots. They found a clot in her chest in one of the veins coming back from her left arm. The clot blocked off enough of the vein that she grew collateral veins to go around it. That's NOT a good thing.

She also has a clot in her leg where her last PICC line was located. The doctors are not as worried about this clot. It will be broken down and reabsorbed by her body.

Lovenox is a blood thinner. It's a shot that's given twice a day. Seraph was on Lovenox July-November of last year. Haqon and I had to administer these shots when she was home. We celebrated wildly when she no longer needed them. We're both sad that she needs them again.

Today they turned off her paralytic to see if she'll breath with the vent instead of fighting it. Today and tomorrow will be spent slowly draining off excess fluids. She's scheduled for an echo on Thursday/Friday. The main valve in her heart is leaking more than normal. Cardiology attributes the change to her extra swelling.

She is still very sick. She's not getting worse--that's a good thing ;)

So Excited to See our Cousins!

My brother came to see me last night! Yay! It was soooo nice to see his family. They live way too far away! We were supposed to get together sooner, but various colds ruined our plans.

Their puppy dog seemed so natural in my house, I kept forgetting she was there. (Usually I freak out about pets being inside)

Here's Strong Bear giving his Uncle Juice a hug. We chatted, watched the kids play, and listened to the Hunting of the Snark.

Delightful Finch and Pirate look enough alike to pass as siblings...but they're cousins :)

Angel playing with the Professor. Pirate and Professor were much better at asserting rights to toys than Angel. Several times she had to be rescued from the much older (er...about 2 months older) boys.

I only managed to capture one picture of my twins' twin cousins together. And, yes, I can tell the boys apart - yay :)

My kids had a blast playing with Butterfly (who's just older than Strong Bear), too...but she was feeling camera shy...so no pictures. You'll have to take my word for it - she's 100% adorable :)

Thanks for coming - was fun to see you all :)

Seraph Hanging out in the PICU

When I get sick, my body manages to fight off the sickness *and* continue to function. When Seraph gets really sick, she throws EVERYTHING into fighting off the sickness....and her body doesn't function well. She is NOT breathing on her own...or regulating her own temperature or keeping her blood pressure up. All of the things we do without thinking, her body is ignoring them to fight off whatever is attacking her.

So, the doctors are optimizing her body functions so she can fight off whatever is attacking her. Then she'll slowly take over the normal body stuff again. I know this doesn't seem like news, but it's all I have to offer right now.

She's sedated and bloated - they're trying to re-balance her intakes and outputs.

All very boring doctor stuff. She's been in the hospital for 3 weeks. I'm guessing she'll stay in the hospital for 2-3 more weeks.

The twins' first birthday is Sunday :) We'll have to do something fun for it.....