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.....

Back in the PICU

Seraph is back in the PICU. She ran a high fever (104 F). They had to re-intubate her. They think she's caught a stomach bug - maybe the flu. Her blood pressure dropped too low.

She does that when she's really sick.

She's stable now. Her temp is normal (on tylenol AND motrin AND a cooling blanket). Her blood pressure is normal (on meds). Her breathing rate is normal (on the vent). She is sedated. She has 3 new IV lines. They're giving her medicine in case it's the flu....and in case it's bacterial....and etc.

They'll keep her on those meds until one of the tests comes back positive OR until she fights off whatever bug is attacking her.

Her x-rays looked good. It's not in her lungs. Her echo looks good - it's not a heart problem. Her heart rate was really high...but it's closer to normal now.

She's off feeds and back on saline.

Basically, she's really, really sick....but she's going to be OK. ...in a few days.

Finally Sunny!!

What a beautiful day! We went walking after Dad came home today. It was nice :)

I missed Seraph like crazy today. Then I found out she was missing me, too. She had a pretty high fever last night...and today. They're doing tons of tests - they think she's caught something at the hospital.

I'm sooooo sad I can't go see her. Sexy Haqon isn't sick!! So he went to visit her (and had to wear a mask the whole time!) We made a special video just for her. While it didn't get any smiles, her eyes were glued to it the whole time it played...and played and played. I hope she knows how much we love her. Haqon will go see her again tomorrow.

Uggggg....I just want her home again. I miss her :)

Thanks, Grandma P

Grandma P took this family (-1) photo of us before she left. The kids loved having her stay with us.

Poor Finch had a fever that night, but overall it's a pretty good picture of us. (from left to right: Strong Bear, Sexy Haqon, Me, Delightful Finch, Beatiful Rabbit, & Angel)

Seraph is doing really well. They're weaning her off her pain meds. (The ones she's been on since she came home in January.) I've been telling the doctors for months that she was ready to wean off them. I guess seeing her smiling face every day was enough to convince them. It's a super slow wean, but she's doing super well and I'm really happy about it.

My sinuses were worse today. The doc said I'd be contagious for a week starting yesterday. I don't expect Seraph to come home before this sickness is out of our house. Her health is too fragile right now to deal with a cold.

Wait....!!

Someone replaced my baby Angel with this sweet, little girl! She stands on her own now, and takes lots of steps without getting very far before she falls down. She looked so grown up today, I can't believe she's almost a year old....

She's almost over her croup. She's not as needy....more explorer-girl again.

This is good because.....

Baby Seraph started on her feeds today - yay :) With a tiny bit of help, she made the diaper they were waiting for. They started her off with just 5ml of formula per hour. They increased the amount every 4 hours. Her tummy is happy! It's been sooo long since she had food going to her tummy (instead of her small intestines). I'm happy she's handling it well.

....So, we were all on schedule to be over the croup BEFORE Seraph came home....and then Delightful Finch picked tonight to come down with a fever. No horrible cough yet, but I'm scared.

Seraph out of ICU

They just moved Seraph out of the PICU. She is doing really well. We're waiting for her to make a #2 in her diaper before they can start her feeds. She's playing with toys. She'll sleep better now that she has a private room.

Angel and Strong Bear both have croup. Somehow it skipped Finch. Hopefully they'll be all better before Seraph is ready to come home.

Off the Vent!

I wanted to watch Seraph's spontaneous breathing trial (where they turn the vent way down and see if she breaths OK all on her own). When I arrived, they'd just barely extubated her!

She's never been extubated so fast.

She aced the test. She did so well, they skipped the high-flow oxygen step and put her on normal oxygen. Then they had to turn that down because she was still too high. Good job, girlie!!

No, that's not a sucker. It's a pink sponge. The nurses clean her mouth with them. Seraph LOVES to suck on them. It's like a tiny drink for her. Her throat must be hurting from that tube, because the only time she was happy was when she had a sponge to suck on. They don't let her have the sponges often because she loves biting them even more than she loves sucking them.

They've eased off her meds some, too. Hopefully she'll be feeling more like herself tomorrow.

She's not ready for food through her g-tube yet. They plan to keep her in the PICU for a few more days.

Seraph's GI Surgeries done!!

Here's Seraph at 5am in the waiting room. Usually her trips to the hospital only have one parent. She was thrilled to have both of us with her.The early hour didn't bother her one bit.

Note the redness on her cheeks. That's from repeated retaping of her NJ Tube. That cheek will heal up soon. The NJ also gives her a huge gag reflex. It bothers her nose, and she feels better after she pulls it out.

Seraph had HUGE smiles for her daddy. OK, she always has huge smiles for her dad. It's hard to be jealous when I get to see her being soooooo sooooo happy.

Mommy got big smiles, too. Seraph loves playing with my hair.

More huge smiles for Daddy. Huge smiles for all the nurses, too - even while they were checking her blood pressure.

Not so happy when they placed her IV. ...but a few minutes with her dad and she was happy again.

They were NOT able to do the surgery laprascopically. The pressures in her heart were too high. So, they made an incision just below the scar from her heart surgery. They expected the surgery to take 3 hours. It took 5 hours. We took turns trying to sleep in sleep-resistant chairs. Next time we're going to sneak up to the couches by the piano for naps.

Part way thru, we jumped up and donated to a blood drive. They had free grape juice after!! I hadn't given blood since college. I got up too soon after and got dizzy. I had to lay on the floor with my feet up listening to cool stories about wolf attacks. Anyway....

Seraph's surgery went well. Her NJ tube is gone for good. Her reflux should be gone, too.

Now comes the tricky part - getting off the vent. They had to intubate her for the surgery. They kept her sedated over night. Today they're easing off her sedation so she can start to breath a bit on her own and get rid of extra fluids around her lungs. Her lungs are very wet today.

Seraph has always been slow coming off the vent. Please keep her in your prayers.

Seraph Re-hydrating...

Here's Seraph smiling for her papa!

Some of her medicines help her body get rid of excess fluids.  When she had diarrhea, her doctors thought she was OK on fluids because she's on continuous feeds.  BUT...her body wasn't absorbing the fluids well because she was sick. So she got dehydrated.

They have to rehydrate her slowly...or else she'll get swelling in her brain which can lead to brain damage/coma/death. But none of those things will happen because they're being very careful and she's doing very well.

She should be home in 2-3 days.  They're going to reschedule her intestinal surgeries for next week.

Her nurses say she's always full of smiles!  They love it, and she hasn't given them any trouble.  When we arrived today, she was sleeping so soundly that even when they poked her to draw blood she refused to wake up.  Then her daddy started playing with her - she peeked to make sure it was him....and then was wide awake...giggling for him :)

Postponed...

Seraph's surgery has been postponed.

She is at the hospital being treated for dehydration.  They think she'll be able to come home in a few days.

It's hard to walk out of her room at the hospital.  In the past, I just give her tons of kisses....until she gets annoyed and starts trying to escape!  Today when I gave her kisses, she turned towards me and kept trying to touch my face - grab my nose, my hair, my mouth.  She was all smiles.  I still don't know how I made it home.

I miss her.