Merry Christmas!!

Belated holiday wishes to everyone. My plan was to post so much during the holidays, and that obviously didn't happen as Christmas has come and gone! We had an absolutely unbelievable Christmas this year - one that will definitely go in the history books! There is so much to share about the events from the week, but I don't have too much time right now. The big kids went to the basketball games with Zac and Olivia is needing some attention. I left my camera at the in-laws on Christmas Eve, so pictures will come later along with the details of Christmas! Hope everyone had a blessed holiday!

What do people do?

What do people do that don't believe in electricity? We spent only 4.5 hours without power this morning and I thought I was going to lose my mind. The kids were completely squirrely. Zac was going nuts. It wasn't good. We were getting ready to head out to someplace that had electricity, when it finally came back on. Having a child on oxygen doesn't make things any easier. Luckily we had lots of portable tanks!
The trees are completely iced over and we are still losing branches here and there. It was a snow day for Jack which means everyone is officially on winter break. Except Zac. We decided he is never truly on vacation unless we are out of the state.
We are looking forward to a productive weekend. Zac goes to Iowa tomorrow with some of the kids from school. Jack and Brooklyn have practice in the morning for the church program. My mom is coming to help out with keeping Olivia in the house. I'm going to clean and get ready for our first family Christmas celebration on Sunday with the Chatterton side. The holiday season is in full swing around here!

The newest addition...

We've added another problem to Olivia's list of medical issues. She now has allergies. Go figure. In the big scheme of things, obviously it's not a big deal. It's just annoying. I'm sure it's the Christmas tree since she's never had any issues before. It really just started over the past weekend. Her eyes have been really puffy and at her pediatrician appointment this week it was decided it must be allergies. So, two new medications - eye drops and Claritin.
We are also going to take her back to Peoria for another swallow study in January sometime. I don't think she is quite ready, but because of her rapid weight gain, it would be better to get her off her high calorie diet. She's up to a whopping 28 pounds. She's really been around 28 for a while now, but the last weight at the dr.'s office was 22 pounds in September, so it looks pretty drastic on the charts.
She might start seeing a pulmonologist, too. The pediatrician is going to look into this and get a feel about it from the cardiologist. She has had so many lung issues that she thought it would be a good idea. Her main problem is her pulmonary hypertension, but that is cardiac related, so the cardiologists deal with that. But, the fact that she is still on oxygen, has had so many respiratory illnesses, and has such scarred lungs, it's probably time to get a lung experts opinion. We'll see where that goes.
Otherwise, all is well. Brooklyn is officially on winter vacation. She's had her school program and did a wonderful job as an angel. Jack may be on vacation if this winter storm hits like they keep saying. We signed up for treats for Jack's class, which I felt like I needed to get done just in case there is school. Let's just say, if it does hit, we are going to be eating a whole lot of snowman cupcakes for Christmas! Olivia is feeling much better - just a nasty sounding cough and a little upper airway junky noise. She is only allowed to leave the house to take the kids to and from school. All other times, she is quarantined to the house!

Another Amazing Olivia story

Now, keep in mind that one week ago today, Olivia woke up with a fever and very congested. She spent 3 nights and the majority of 3 days lying in a hospital bed. And what did I find today? Olivia on the third step heading upstairs! I went up to get dressed for the day and came out of the bedroom to find her just climbing away! What an amazing little girl. She is so strong and such a little fighter. She's going to be up and walking before we know it. I don't know if I'm quite ready for that! I'll try to get a picture, or better yet, a video, of her climbing skills next time she decides to go for a hike.

FYI

Olivia had a really good night. I mean, her sleep schedule leaves a bit to be desired, but a good night altogether. Her numbers stayed in a reasonable range and she was much calmer with her breathing. I think it all boils down to her chronic lung disease and not having any extra reserve whatsoever. The slightest effort from her results in faster breathing, lower sats, etc... We just need to get the junk out of her lungs and then they can concentrate on breathing! Have a great day! Thanks for all the extra prayers over the last few days!

Home again.

Well, we got home about 1:30 - not too bad. Olivia is really excited to be home. She is still really, really junky and working pretty hard when breathing. But she is happy and playing and that is a huge indication that she is doing okay. We are praying with all our might that she is able to beat this on her own at home and we don't have to go back. Her numbers aren't great and she is requiring quite a bit more oxygen, but as of right now, these are all things we can do here at home. She just needs to continue to improve. She has very little energy and crawling across the room takes a whole lot out of her. So, for tonight, we are going to try to keep things calm and hope for the best!
It sure is good to be home. Even being gone for just 2 days, I feel like we missed so much. It was fun to hear about the last few days of school and all the things around here that the kids did with Grandma. Hopefully we continue to stay here!

It's a go!

Now we'll just have to see how long it takes us to get out of here! Next post from home...

Ornery Little Cuss!

Olivia had a great night. She took a little nap in the evening and woke up a little spitfire. She threw absolutely everything out of her crib and giggled about each and every one. Her numbers stayed really good. Her heart rate is awesome. She was pretending she was an Indian, spitting, making kissy faces, the whole nine yards! She even had her stethoscope on! I can't see any reason why we wouldn't be able to go home today, but I'll post again after I hear for sure from the doctors. The bad thing down here in PIC is that the doctors don't make rounds until 10:30-ish. Upstairs, they were always around by 8:00. Keep you posted...

Progress

I had to post this picture of Olivia hanging out watching TV. She's definitely feeling better!

So, last night it was getting a little confusing with Olivia's care. She was admitted to OSF under the care of doctors and residents from the Children's Hospital. I requested a consult with the PICU doctors who are under the U of I doctors and they have their own residents when you are admitted for medical as opposed to cardiac. Needless to say, there were a lot of doctors in and out of here each having their own thoughts and opinions. This morning, our PICU doctor transferred Olivia to his care to make things easier! Thank goodness...I was getting so confused!
Anyway, Olivia is doing AWESOME! I got a couple of giggles out of her earlier, she is off of high flow (in record time, for her) and on 3 liters off the wall. She can eat! She just snarfed down 6 ounces and could have gone for some more. The doctor said that if she can get down to 2 liters and hold her own, we might be able to go home tomorrow! I love the fact that she is getting so much stronger and she is able to handle these things is a much better fashion than the "old Olivia." Keep you posted...

Five minutes

Here's Olivia this morning. She's feeling a little bit better. She sat up for a whole 5 minutes and played with her bug sorter. She's just so weak. It amazes me how fast it happens. I really think the hospital itself drains her. She is no worse off right now than she has been at times at home, and she never would act like this. She's probably just hungry and figures it easier to be lethargic and sleep than to think about food. If you remember from previous stays, she can't eat while on high flow oxygen. They made a big jump on weaning it down this morning, so we don't have as far to go. Maybe, if she behaves, she can start eating later today. The docs still haven't made rounds, I'm just bored and thought I would post the picture. Have a good morning!

Tuesday morning update...

Olivia seemed to have a good night. Zac stayed here with her so I could get some sleep. I tried to get some details about her night, but he was a little crabby (rightfully so) and didn't offer much info. (Watch out MHS staff - he's a little grouchy today;-)
Anyway, we are apparently in isolation for Non-RSV Bronchilitis. This seems to always be her diagnosis when there is no solid proof of any other virus (like RSV, pneumonia, etc...) Personally, I just consider it a cold - she just handles things differently than most of us. They drew some labs this morning, so we'll see if anything comes from that. Her breathing is 90% better - almost back to her baseline. They were able to wean down her O2 a little bit last night, but she still has quite a bit to go. We'll see what the day brings. I'll update more after the doctors make their rounds.

Negative is good.

Things are going well here. Olivia pretty much hasn't woken up since about 11:00 this morning.
I'm jealous.
So far, so good on the lab tests:
RSV - negative
Influenza - negative
MRSA - negative
fever - coming down
respiratory rate - slowing down a bit.

They are going to try and wean down her O2 to see how she handles that. She's doing pretty good so far. If she gets any worse whatsoever, we are most likely heading upstairs.
Right now we are being followed by the Children's Hospital doctors and all their residents, as well as having the PICU doctors and residents keeping a close eye on her. We aren't as familiar with the faces of the Intermediate unit, and haven't always had the best experience, but things are going really great. I'm loving our nurses today and they have changed a few things that make me feel soooo much more comfortable down here. Or maybe it's just because we spent a night on a general pediatric floor in a small hospital last night? Either way, we are hanging in there and the doctor thinks it's just a viral thing that needs to run its course. Quickly.

'Tis the season

Last night at the Christmas party

Jinxed.

Dejavu.

Ugh.

Olivia's in the hospital. She woke up yesterday morning with a fever. I gave her some Tylenol and that took care of it. She seemed to be much better as the day progressed. So much better that we decided she could go to the Christmas party and Grandpa and Grandma's church. She took a turn for the worse and we took her in to the ER in Macomb about 9:00 last night
Not feeling so hot...

The actually admitted us to the hospital in Macomb. We've never done this before - always straight to Peoria. She made it there until about 4:30 this morning and they called in the doctor. She sent us to Peoria by ambulance and we were checked in here around 10:00. We are in the Intermediate unit right now and things are going well. Olivia's on high flow oxygen (7 liter at 100% for those who like to keep track). Everyone is thinking virus, but we'll see what the labs and xray show.

Today...feeling really icky.

We'll keep you posted... Thanks for any extra prayers and simple thoughts. We really appreciate them!

St. Jude appt.

Guess who doesn't have to go back to any Peoria doctors until February? That's right! We had an appointment at St. Jude today. Her counts were great, great, great! We will go back in 3 months for a follow-up and then most likely repeat a bone marrow biopsy in September of 2009, and if all looks good (as anticipated) we will probably be discharged from St. Jude! It's so crazy to think that 7 months ago we rushed to fix her heart to prepare her for chemo treatments. Dr. Al. from St. Jude was talking today about how far she has come and how worried she had him at the beginning of this whole process. We both agreed that the right things happened at the right times and we got really, really lucky on this one. God is good!
We also see the cardiologist in February and will have an Echo done to check on the old ticker. Until then, we still have to go to Peoria for lab work every couple of weeks which kind of stinks. We have a machine at home that is supposed to calculate her Protime for us, but for some reason it doesn't work with her. It's a long, frustrating story, but if we could get that working...it would be awesome.
Otherwise, all is well on the home front!

Tis the season

The holidays are in full swing here in the Chatterton house! Jack starts us off this Saturday with his concert at school and Breakfast with Santa. Then to Grandpa and Grandma C's church Christmas party on Sunday night.

Zac and Brooklyn went to get the Christmas tree last weekend. Brooklyn picked out the "perfect" tree. I would probably argue that, but I know I wouldn't win, so why bother. The rest of the house is decorated, we've had our first (and second) big snowfall, and we are in the midst of preparing our hearts and minds for Jesus' birthday!

Zac and the big kids still walked home from church (Livvy and I drove, as usual!)

Our first snow angels of the season!

Poor Livvy. On the inside looking out.

So, during this season full of joy, I thought it was necessary to share a couple of things that have brought joy (and some frustration) into my heart.
While setting up our Fisher Price Little People collection, I said we still needed the nativity set from downstairs and sent Brooklyn to get it. Here is what I received: A bus full of wise men, an angel, animals, baby Jesus, Mary, Joseph, you get the idea. But please note: the driver is the right guy! I'm not quite sure this is how the crew got to Bethlehem, but who knows?
The frustrating situation, that put a huge smile on my face, happened Monday morning. In our usual rush of getting the kids packed up in the car to take Jack to school, we couldn't find his hat and gloves anywhere. We searched and searched and finally decided they must have been left in Daddy's car. After my lecture on being more responsible and saying that I didn't know if he would be able to go out to recess, we headed out the door. Pulling out of the driveway, I look to my left and see the adorable snowman that the kids built on Sunday. The conversation that followed:

Me: Jack, who's gloves and hat are the snowman wearing?
Jack: Mine.
Me: Why?
Jack: He needed a hat and gloves.
Me: Ugh...be sure to tell your teacher that your snowman is wearing your hat and gloves and make sure you tell her that your mom and dad weren't aware of it.

Luckily there was no outside recess, so I didn't have to be the bad mom that sent my kid to school with no gloves. The girls and I still went to the store and got an extra set of gloves and a hat...just in case the next snowman gets cold!

A belated Thanksgiving post...

I meant to do a post dedicated to our angels and heroes at the Children's Hospital of Illinois(mainly our PICU family) on Thanksgiving, but time just got away from me. Imagine that.

We miss you guys terribly! Don't think that, for any reason, we want to be back there with Olivia as a patient, but we do think and pray for all of you on a daily basis.

I will always appreciate how each of the doctors took my "unprofessional mommy opinion" into consideration, even if it was far-fetched. I will especially remember all of the nurses and doctors reaction when we were told Olivia had Leukemia. We had to comfort you because you all love Olivia so much!

Anyway, this post is specifically dedicated to thanking each of you for everything you have done for us over that past 2 years. Without you, Olivia wouldn't be with us today...and she wouldn't be doing as AWESOME as she is! I know you will appreciate the next few pictures (be sure to show Nana Peg from respiratory - she'll love the breathing treatment picture!)

So, Olivia is crawling on all fours about 90% of the time! She is getting really fast! She plops down into her army crawl when she's in a hurry. Today during therapy, she stood up from a sitting position by just holding on with one hand! All of her therapists think she is getting so strong and can't believe the progress she has made even in just the last month! She has had two pretty nasty "colds" that had me worried that we would be up visiting in the last month, but she got over them all by herself (well, with an antibiotic, breathing treatments, and a little bump up on the O2!)

The things I thought you would get the biggest kick out of show just how much you all taught her! A few weeks ago when she was getting breathing treatments, she grabbed the treatment out of my hand so fast and took over all on her own! It was absolutely hilarious!

The other thing is her new found love for stethoscopes. She went through a phase that if she even saw one of those things, she flipped out! Now, she won't take it off. She has her play stethoscope on all the time. She naps with it on and we have to take it off before bedtime. She searches for the thing when I try to get it off of her. I see her working in the medical field in the future thanks to you guys!

Anyway, enjoy the pictures and enjoy the upcoming holidays! And please know how grateful we are for each of you! Thank you!