We can be....

Yoo Halloo! (from the Phantom Tollbooth)
Little A and I have been home for almost 2 weeks and Avery is doing well!  Her heart is functioning great.  She is pink and her feet have been warm. :)  Someone asked me if she is done with her feeding/g-tube, and she is not.  Avery is still working on eating.  She likes to play with her food, asks for food and loves to taste/lick food.  However, she doesn't swallow much of it.  When she eats all her food, then she can get her g-tube removed.  Until that blessed day, we now tube most of her food.  :) Maybe one day she can hook herself up to eat. :)

I'm happy to be getting back into life as I know it.  I love my yard and came home just in time to see it all blooming.  I am up late at night and sometimes up a lot during the night, but that will change as time goes on.  I'm just happy to have a family, warts and all (none of us have warts).

Together

It's been almost a week since Avery came home from the hospital.  I thought I'd post a little from our last two days there.

Laurie Skalku is my visiting teacher and a wonderful lady.  She and her activity day girls made cards and put together this basket-o-fun for Avery.  Avery loved it!  Thank you.  To quote from a card she received, "Wars the baby, thars the baby!"

Here is Avery showing me a bear from her basket.

You know you're getting close to going home when you're completely disconnected from anything, and you can push your buddy in the wagon!

On our way out of the hospital.  Thank you and see you never!

Zachery had his Wild West day at preschool today.   He named his horse, "Yellow". :)  They had a campfire (sort of) and made trail mix for the road.  He had fun! 
I registered him for kindergarten yesterday and I'm feeling a little sad about Zach going off into the big, bad kindergarten world. :)

Home!

Well,well it's been a great day overall, and busy! They took out her chest tubes! Her other fluid issue seemed to resolve itself, after a few blowouts, ahem.
Tomorrow they will take another x-Ray to see if all the fluid is pretty much gone. Then...she could go home!! I'm pretty certain she will.

Hello, Happy

It was a beautiful day and we went up to the play deck.  This little buddy, "puppy dog" goes everywhere with her.  In fact, puppy dog drinks more than she does right now. :)  I'm glad she's got a squishy buddy.

We needed to get Avery to walk around today and see if any more fluid would drain out, which it didn't. :) Sooo, the plan is to have an x-ray in the am and then take the chest tubes out!  Wahoo.  (provided nothing changes that.)  What, you ask, would keep us here?  She isn't getting rid of enough fluid and she's puffing up.  That's the next thing, but hey, no more chest tubes!

Eric stopped in for a surprise visit tonight!  He met us upstairs and Avery climbed, up in his lap and they snuggled.  It was really sweet.

Oh Blah Dee Oh Blah Dah

Avery and I had a nice visit with a lovely gal Courtney today.  She made some divine cookies and to my chagrin, there's only 2 left. eek.  They are divine.

Avery has been very happy and her chest tubes aren't putting much out, which is good.  The nurse practitioner has not said anything about taking them out, so that puzzles me, but I'll find out.

Avery also got some saline in hopes to get her body to flush more out.  She has more diuretics, in order to do the same thing. 

Today is a beautiful day, at least last I checked, and when the little miss wakes up, we're heading outside.

Cortnee brought me "The Glass Castle" to read.  I've heard a lot about it and so far, it's pretty interesting.   I know a few people who love it, and at least one who "doesn't care for it".

There's not a whole lot to say.  I'm getting ancy to go, but I think I'm the only one.  Wait and see, wait and see.  :)

The Log Song

Avery is taking a naparoo.  One of her chest tubes is leaking out and after a long story which I will spare you, her surgeon came in and said she'd stitch it back on so it will stop slipping out.   I was relieved.  A chest tube that keeps slipping out and leaking all over is no way to live, even with pain meds. :)

What rolls down stairs alone or in pairs, rolls over your neighbor's dog?  What's great for a snack if it fits on your back, it's log, log, log.  It's lo-og, lo0og, it's big, it's heavy, it's wood!  It's lo-og, lo-og, it's better than bad, it's good!

(Just some of my coping skills coming out.)

Last night when I got back to the RMH, another mom told me about her son's situation.  This boy had been in the hospital for Avery's same surgeries at the same time.  However, he's back now due to complications and they're going on 11 weeks now. !!  His complication started out as something that Avery has, but has turned into a long different issue.  It's just so hard sometimes.  They seem to be managing okay, at least last night.   Is it that we get through it all, or how we get through it all?  Time passes, regardless of what we do.  That leaves how.   With help. :)
Thank you for your prayers and kind words!

Pyramid Schemes

Avery had had a good morning before I got there +, but when I got there her chest tube was leaking on her.   It hurts messing with the chest tubes and she let me know, poor thing.   She had been doing well on her low fat diet formula, until lunch time today and then for some reason it just kept coming.  Lil girl Ave is sleeping now and will likely wake up happy and ready for something fun.  Aren't kids great.

Her chest tubes are both draining a lot, because the suctioning was taken off yesterday and they let gravity drain it.  So that's why her chest x-ray showed fluid in the bottom of her lung area.  Now, with the suctioning back on, she has drained a lot.  I'm still hoping and praying that she'll get a chest tube out tomorrow. :) (-this is a huge grin.)

I'm not complaining, I am making myself clear to those deciding.  I believe you get the best care when you/or someone else is keeping track and watching over the care given.  At least one person has to know everything about one's care.  


This cute dog came into today and lit up Avery's face!  It was so cute. 

She was so sad when it left.


A friend from college, Jamis Buck (who quoted someone else) wrote something funny on fb today, and I'd like to share it here:
"I hope if they find intelligent life in outer space, that they're rich and haven't heard about pyramid schemes."

Lovely

Monday, Monday, da da, da da da da (from the Mamas and the Papas). 

Is that sweet or what!

Avery still has some thick junk in her lungs that seems to be hard for her to get it all out just by coughing.  The good news is, is they took her off oxygen!  One less thing.  We still are checking her oxygen level because she has been a little low today (because of the thick junk).  blah, blah, blah, not a big deal.
She is happy (except when in pain) and enjoyed playing today.

1- Her CO2 level is down to normal.  That's great. 
2 - Her little wounds are healing well. :)
3 - One of her chest tubes is hardly draining anything, so I'm going to push for removal tomorrow. Wish us luck.  I talked to a lady today whose daughter was being discharged.  Her girl had been waiting a month just on the chest tubes to stop draining, and she had the kilus thing-y.  Hope, hope, hope.

JHACO (or something near to that) is at the hospital doing a check to see if they're following all the regulations.  That means the hallways are clear, management is stressed and they made Avery get the full cage on her bed.  It looks like she's in a circus cage.  She cried and was reaching out to me when they were raising the sides and putting the top on.  The nurse almost let me sign a waiver so I wouldn't have to keep it on, but no.  Ave doesn't try to climb out of her crib at home, so why would she here.  Don't give me the reasons, because they already did. :)  It doesn't really matter. 

Avery had 2 great nurses today and that's always a great thing.

Sunday

We got Avery up in a stroller to go to the playroom today. She was playing with the toys and got so excited she stood up. Then she stood by the train table and shuffled back and forth. She finally had a productive situation in her pants, so we opted to have her walk back to her room. I held her hands but she did it!

Avery has been awake and herself since last night. I'd left her sleeping and when I got back 10 min. later, she was a changed girl. Sitting up, crawling over to get her sippy cup and laying back down! She was non-stop after that. Her moving around will help her get all the loose fluid drained and closer to her going home.

She's back!

Avery got so excited when she saw Zachery!  It really was cute.  We got Zach up in bed with her (Dora was on) and she just giggled and smiled.

Zach had a great week with his cousins Lauren and Parker!  He looks like he grew up a little too.  I missed him.

I couldn't resist hugging my chillins.

Avery loved playing with the telephone.  It's hard to see,but she has the phone perched on her shoulder, like any multi-tasking person does.  She was all over this playroom.  She was wobbly, but she was oblivious to that.  :)

*Avery has some lipids (kilus) amongst her lung drainage, so she needs a low fat diet for awhile.  Another wait and see day tomorrow. 

**Last Friday, somewhere in the afternoon, I started thinking it was Tuesday.  I even planned to watch Lost in Avery's room that night.  When Avery went to sleep, I looked for it on tv and after 10 min., f-inally realized that it was Friday.

Riki Tiki Tembo

Trisha and I

Cute smile from our boy Zach

Cute smile from our girl Avery

I had a nice visit from a good friend and all around lovely gal, Trisha Marshall Snow!  We chatted and did a little reminiscing of high school days, then caught up to adult life.  (Man, I don't feel like an adult sometimes, often, especially around old chums and when it's time for someone to make dinner.)  She made me laugh and the world is just better when there's someone like her there, doing the right thing even if it may be hard for a bit.  Thanks for stopping by. 

One thing I learned from Trisha is that with all the negative vibes out there, it's better to put your best foot forward and be positive.  Talk about the good things, and don't focus on the bad.  So, I'm going to focus Avery's updates on the positive and send out the good vibes out into cyberspace.

Today is Saturday and the sun is shining! 
A good friend, Alison is stopping by.
My mom was able to stay with me here this past week and was a huge help and support to Ave and I.
(I secretly didn't give Avery her full methadone dose in attempts to help wean her off) sure hope I don't regret it.
Avery got up to walk, only took a step, but got up yesterday and we're going to try again today.  I think she loved getting out of her bed and watching the other kids hooked up and in the playroom.
Avery's sores are looking better.
Eric and Zach are coming up tomorrow after church!  Zach spent a week at his cousin's house in Newark, OH and loved it.  Thank you Liz and Tim!!!
Hair detangler spray is a good thing and did the trick.
I still have some easter candy!
I thankful for time passing and the internet to communicate with family and friends out there.
Thank goodness for air flow (there are gurgling noises coming from the sink in our hosp. room).

What is your favorite children's book?  Mine was Riki Tiki Tembo, about the boy with the long name.

Possibilities

Coloring eggs

.

"Cheese", on our family easter day.

Eric and Zach on Easter.

Ouch.

Avery is chillin' listening to her gal pal, the wide headed Dora.

Avery is doing well! She no longer has to wear the monitor leads (yay!). They turned down her oxygen and she is doing well with that. We're weaning her off her valium & meth, and she could come home with that if she needs to. Her chest tubes are not draining much (good) and MAYBE tomorrow they could take them out! She does need to walk around before she would go home and she's still kind of weak. We gave her a bath and washed her hair so she is looking better altogether.

I've seen a lot of my favorite staff here on this cardiac general floor. Avery's last stay was long out here on the floor and we developed our favorite people, nurses, hosts, and tech's. They were all here yesterday and I'd nominated a few of them for this shining star program. It just made me happy to see them and one of them thanked me for the star. You can't put a price on excellent care, maybe you can. Every time Avery gets a nice, competent nurse, ect. I am so thankful and I can relax that she'll be okay.

I'm cautiously optimistic and I'm confident Avery will be able to come home way before she did last time. We are so thankful to all the help we've received and for prayers and fasting that have been in our behalf. I know there is power in prayer and with God all things are possible.

Avery has been able to sleep today and is snoozing now. :) We got to snuggle and read some quality Dora together.

Tonight we were giving Avery a bath and took off the lead wires, that have the really sticky stuff on them. Well, she peeled three leads off and the skin was raw underneath! It was so nasty-sore, the skin peeled off. I looked away, but she did pretty well (I think it was due to her less stoned state). They don't know why it was just one side of her chest.

Overall she is doing well, her shaking has gone down, and her next step is to see her smile. Her chest tubes are draining less and when they stop draining she can go home - ta da!

Can I go to bed now?

Thank you mom for being here and helping us out so much!  We love you!

I have to vent. (My mom made me edit this) I'm sooo-o upset at the doc tonight! I know it's not your kid or even the critical patients, but I care. It matters to me! Avery has been WIRED, so stoned and unable to sleep all day. It's 12:30 and she's been awake since 6:30 a.m.

Ok. Avery's nurse just called and said Avery just fell asleep. SORRY. I knew if I confronted the durn doc, I would just end up crying. Avery's had some great nurses and doctors, truly we've been blessed. Then there's the pretty good nurses who are nice too. I am tired.

Avery was into wearing people's glasses today. Eric's, grandma's and one of the nurses. :)

Ave's nurse from the night before dropped off this cute apron and baker's hat for Avery.  It's really cute, and clearly Avery is thrilled. (just stoned).

These flowers are from Eric and Zach on Easter, and they're from our garden! 

This is the face we saw all day.  Poor stoned thing.  Her hands and feet were shaking all day.  I feel so bad.  Her neck i.v. line clotted and so they had to take it out, stopping her morphine and ativan early - now she's on oral meds for pain.

The nurse told us the shakes could last up to another 2 days.  Please don't use drugs.  It hurts your mothers.

Today has been a good day. Avery was awake all day and I got to hold her. She is having a hard time getting off some meds and she has the shakes. So, to help her ther're switching to Valium and methadone. I know it's medically sound, I trust, but it sounds sketchy. Avery is cool as a cucumber and shows no emotion. Anyway, she is coming along well and will be happy tomorrow if she sleeps tonight.

Hopefully I can upload some pictures tonight.

10 Ways To Find Out Your Gas Gauge Doesn't Work (by Eric)

1.  You run out of gas on Route 23 on Easter Sunday as you are taking your son to his cousin's house to spend the next week while your daughter is recovering from open heart surgery in the ICU, your wife is in the Ronald McDonald house, and you hope to get caught up on all the work you have been putting off at the office.

Ok, so I don't have 9 others, at least not to talk about here.

We were outside of Marion when the car started to sputter.  I looked at my gauge and thought, hm, half full.  Then I looked at the trip mileage...340, on the 8 gallons I put in the other day.   Sure, its a Nissan, but I knew right away, it doesn't get that good of mileage anymore.

Well there we were, on Easter Sunday, on the side of a highway, with the next exit miles away.  I asked Zach if he wanted to pray with me so we could find some gas, or someone to help us... "Sure Daddy" and he quietly folded his arms.  After we prayed, we got out and approached a wooded area that appeared to have some homes within.  The barbed wire made me think twice about sending him over, but Zach let me pick him up and over so he could climb down on his own.  

As I climbed over he shouted, "Dad, be careful!  There are tigers in the forest.  We have to hurry."  Well, we made it through the woods, and found an abandoned home.  I felt impressed to start walking south, and we found a family that had just returned from Grandma's house and Easter dinner.  They were kind enough to give us a ride to our car, along with a few gallons of gas.

As we drove away, Zach said a prayer thanking Heavenly Father for protecting us from the tigers and helping us find some gas.  I thoroughly enjoyed spending the weekend with him, despite the circumstances.  I'm thankful for such a memorable teaching moment about the power of prayer.

A Good Day

Happy Easter! Today was a good day. Avery's temp is gone and I know she is getting better because she kept waking up. They suctioned out a bunch of junk from her lungs and once she got so upset she clamped down on her vent and kicked the nurse and bit her finger - all while under mild sedation. :) She also bit her cheek while she's been chomping on her tube. I think she has shown spunk. The vent is really bugging her and they'll likely take it out tomorrow!

We had a great visit with Eric and Zach. Zach said "Oh, I'm so excited to be here!" Really, he wanted to go downstairs and play foosball. I agreed anyway. I missed my little big boy.

We feel the strength of the Lord through prayers for Avery. We are so thankful for that and it means a lot! I got a wonderful Easter basket of sweet notes and treats and it so brightened my day! Thank you.

Avery looks so big, older a bit. I have noticed her pink toes. :)

Easter Eve

Today was a good day overall.  I was kind of discouraged this morning, but things always seem to keep changing.  She takes her time.  Her temp is better.  They took her off the cooling blanket (wretched thing) and she is maintaining a good temp. :)  Avery's had great nurses.  All of them are different and focus on different things, but have been great for what Avery's needed.  Tonight, her nurse has cleaned the whole bed, and Ave, and is redoing all her meds/drips/tubing stuff.  I do love clean and organized.  The day nurse, cleaned Avery's mouth and didn't give her more sedation (yay) when she was trying pound on her to get the junk loosened from her lungs. 

I scrapbooked a little, met Avery's roommate's family, who speak spanish - de ja vu.  My mom was able to come up last night and part of today.  My mom is great and after hearing the conference talk about getting the most out of your relationship with your mom, I knew I had a special one.  Thanks mom.

I got to help give Avery a bath today, or really, a quick wipe down.  Avery's been very sedated today, but she stirred a little during all this, which made me feel better, that deep down she was there. :) 

I don't think I put these pictures of Zach trying his new bike.  He's still getting the hang of it.  It makes him look so grown up-like.

This was a funny pic of Ave at Jan's house.  Jan is very kind to let my kiddos try and get into her stuff while we visit.

First 24

First night. 

Poor little thing "cuitadihno".  She has one pony tail left in her first 24 hrs.  Nurse Amanda did her hair, including pink bows, which have since fallen out.  A girl's gotta try to look her best.  I think the ponytail reminds me that she's just 2 and in a couple weeks she'll be high stepping again.

This is puppy dog doing what he can to help.

Avery is pretty much still sedated.  Her fever had gotten worse last night, but it's lowered since.  She'll be intubated (breathing machine down her throat) til Sunday maybe.  She's stirred off and on, but she's upset and grabs at the tubes to pull them off, so they quick sedate her.  I know she needs to rest to get better.  The first few days are always up and down.  Her heart is doing well.  It's her lungs that have always been the issue post surgery.  That's our gal. 

Thank you for all the thoughts and prayers in her behalf.  God hears and answers prayers, everyday.

What else to talk about... next post will be about our Easter last week.  Hurray for sunshine!

Pre

They're done with the surgery and working on closing her up right now.  We haven't talked to the surgeon yet, but the nurse was smiling so things must have gone well! 

Yesterday Avery had a good day.  She played and let the doctors listen to her heart and except for her kicking and screaming during a simple e.k.g. she was great.  Eric came with us yesterday and I'm so glad he was here.  One of us could talk to the doctor, while the other was with Avery, and he was just a big help and comfort to me.

Avery had an MRI and sedated ECHO done yesterday.  They gave her something to calm her down, for "separation anxiety" when they took her away.  It was funny because she got loopy and couldn't sit up straight, but had a nice grin on her face.  She did great.  After it was done, we tried to give her some food in her g-tube, but both tries it didn't sit very long in her stomach.  She was all swollen with fluid, especially in her face.  Avery was so content to play with her puppy dog and stroller, hurray!

This was during dinner last night.  She loved the pizza and had fun making a mess.

Somewhere we lost her pacifier.  Avery kind of NEEDS it to go to sleep.  Thankfully someone gave one to Eric when he asked.   Sha-woo!

"Lo, lo" -that what she calls a phone.  Avery jabbered on the phone pretty often last night.  She has lots to say.

I was just taking this picture when they called her name, and they both looked. :)

This was right before they took her away.  She was holding a toy cash register scanner, as a phone of course.  I don't talk that much on the phone, but she does.  Avery did really well with everything.  She pushed her stroller around the pre-op room while we waited.

Next post will be her set up in her room. :)  Zachery is having a good time with his grandma Christensen.  Thank you to everyone for your prayers, kind wishes and support.   We feel the strength of the Lord with us.