Thursday, April 30, 2009


Olivia got a package in the mail the other day from Mrs. Wilhide's second grade class in Greencastle, Pennsylvania! We do happen to know one of the student's in her class (she's been praying for Olivia for a long time now! Thanks Emma ;)

Look at all these beautiful cards! Olivia is going to love reading them all when she wakes up! Thanks so much guys!

Wednesday, April 29, 2009

Up and down morning...

Olivia has had an okay morning. She's been really up and down with her blood pressures and somewhat with her oxygen saturations. She has definitely evened things out this afternoon. She still looks great, her numbers are good, and things are staying status quo. Not much else to news is good news!

Tuesday, April 28, 2009

Our beautiful baby!

Olivia had a really good night. She does seem to be a little bit awake under her paralytic, so they are trying to find something...anything...that will keep her more sedated.

I am not really good with explaining the whole trach thing, but here is what I know:

The trach will not help nor hinder her pulmonary hypertension. We decided to go with the trach, because it is, most likely, the only way we will get her home. She is not tolerating weaning down on the ventilator and she really needs her medications for her pulmonary hypertension. Two of her medications can only be administered through a vent. With her trach, she can go home on a vent. It will require 24 hour nursing care, so we are taking that into consideration now as we house hunt. It will definitely be a life change, but it will also allow us to be a family again. The trach is one step closer to home, however, it's a 6-8 week process to get your house approved and ready for her to be released. The fact that we technically don't have a home also throws a glitch into it. We'll just cross that bridge when we come to it.

So, as far as how the trach will help will get her home, it will help respiratory-wise, and she'll never have to be intubated again! Any questions?

I'll leave you with this beautiful face...
And this one...

Monday, April 27, 2009


Olivia handled all that like a pro. Basically, there is a basic pediatric trach tube. It just so happens that Olivia needs one that is 2 sonometers longer. Right now, she has the regular endotracheal tube stitched into her neck. It's rather strange looking, but is serving it's purpose. They will order her the size she needs and will use the new one when it's "trach change day" which should be next Monday. They'll keep her paralyzed for at least 3 days and then rather quiet until that first trach change. Can I just say it's soooo nice to see her face with nothing on it! It's been so long - no tube, no tape, no tube holder, no oxygen! She's beautiful. So is her new G-button;)


Now, I know better than to say we aren't expecting any surprises. Well, we got one.
We saw Olivia go by about a half an hour ago, but no one had come to get us. We assumed they forgot us, so we went down to see if we could get to her room. Nope. The trach is too short.
Apparently, she's longer than the average bear, so the trach ends up not being long enough. For the time being, they are going to stitch in a temporary endotracheal tube (I think similar to what was in her mouth, only through the new trach opening). Then the doctors are going to special order some trach tubes that will be long enough for little Olivia.
Oooo, that child! She's something else, isn't she???
Anyway, our consolation prize? You know that g-tube I dislike so much? They switched it out to a G-button! Yeah! Hopefully, she'll tolerate this better.
When we get to see her, I'll be sure to post an update. The doctor did say she is doing fine, it's just the whole trach thing...


Olivia just went down to the OR. We're not expecting any big surprises, but will post when she's all done! It should take about an hour and a half, so we anticipate more like 3 hours.


We're going to do it.
Nothing like putting the pressure on with short notice. Olivia is going down to OR around 3:00 this afternoon. My heart is beating a mile a minute, but I know this is the right decision. It's the best thing for Olivia short term and long term. It's definitely going to be a life changing thing for all of us, but it will also get her home.
Speaking of "home..." I suppose we should find one. There is a pretty lengthy process to get your home ready for a kiddo with a trach (like 6-8 weeks). It will be nice to know this while house hunting. Maybe we'll want a house with a room downstairs for Olivia and her nurse, while the rest of us are upstairs. Who knows? Lots to think about.
I am so glad that God gives me this peace that I have and that he made me with the trait that I don't get easily flustered...although He is pushing the buck on this one!

Pray, pray, pray!

We just heard back from the cath conference this morning. They discussed Olivia's case and the cardiac surgeon isn't completely convinced that the scar tissue around her heart is causing constriction. He did say, however, that he could put a trach in today. We knew this was an option, but it's kind of short notice. I've talked to Zac and we both feel like this is what it's going to take to get her home. We're discussing it with everyone now....keep you posted.

Sunday, April 26, 2009

The recession.

Apparently Dunlap hasn't gotten the memo about the recession that seems to be going on. Houses are expensive. It's sad to think that the houses we looked at today are almost 4 times as much as our first house in Galesburg. Now, granted that was a smaller house and it was frequented by a few bats here and there, but it also had lots of character and was just a good house.
Anyway, we went house hunting today. We didn't quite fall in love with any particular house. Although, Zac did fall in love with one particular building company. He's one of those people that notices the construction of a house. I don't. So, we are actually entertaining the thought of building. That thought may pass by tomorrow, but it's on our minds tonight.
In the midst of all this, Zac's car died. His transmission went out. He made it to a friend's parent's house, and there it sits. So, after our house hunting, we went car hunting. We may have found a pretty good deal, but we'll have to see if it passes Zac's inspection later this week. But, I am excited to say that I may be getting a minivan back!!!
Olivia has had an awesome day! She's been more calm when she's awake and has required less "extra drugs." She's asleep now, so I'm thinking I better go do the same thing. It's been an exhausting day of running around!

Saturday, April 25, 2009

Our wild child.

It seems as though Olivia is crazy!!!
She's all over the place. This whole sedation thing is for the birds. It's taking so many drugs to keep her calm. Part of this is because she has been on so many of these drugs so many times. Her Down's is also to blame. Kids with Down syndrome have such a high tolerance to pain and pain medication, or so I hear.
Because of her craziness, she has been inching her vent tube out every once and a while. They've had to push it back down twice in the last 24 hours. We are praying it stays in!

Friday, April 24, 2009


Olivia got to turn around!!! It was a rather lengthy process, but it's done and she tolerated it just fine! I even got to hold her for a little bit while they turned the bed around...bonus day! She already seems so much more comfortable, don't you think?

She had some balloons waiting for her when I came in this morning! She loves them! We hooked them to one of her restraints so every time she moves her arm, they bounce all around! She was holding on to them in her sleep earlier. So sweet. (Thanks Ryan, Judy, Christian, and McKenna!)

Anyway, she had a rough night last night. Apparently, her heart rate was in the 30's and her oxygen sats were in the 50's. Her blood pressure wasn't picking up at the time, so who knows what that would have been! It seems to be the consensus that she wasn't sedated enough. They did increase her sedation this morning, but she still is a wild woman when she wakes up. What else...she may get some blood today, and they may try to go down one little step on her vent.

She's on the roster for Monday's cath conference. They are going to discuss her possible constrictive pericarditis. If the surgeon agrees that it's worth it to go in and remove the scar tissue, she will most likely go on the schedule for later next week or the following week. It's starting to feel like we are at a bit of a stand still, again. It will be nice to make some headway.

Thursday, April 23, 2009


I don't think Olivia has been so excited to see Barney! She's still facing backwards since her ECMO scare last week. No one seems to be brave enough to turn her around quite yet. So, our nurse today got Olivia her own little DVD player so she could watch her Barney. It's made her a bit more calm, which is nice to see. I'm even posting a picture of Liv's watching her movie. It's mainly for Uncle Ty and Aunt Jenn in Florida. They requested pictures. When they saw her a couple of weeks ago, they thought she looked a lot better in person than what the blog makes it sound like. So, hopefully no one is offended or upset by the pictures. I usually don't like to post them because I don't know who might be bothered by them. Please be sure to tell me if you'd rather not see them. She looks great to us, all things considered!

Crazy girl...

Okay. I just heard back on the preliminary results on the echo. Nothing significant. Same old, same old.
However, another exciting thing happened overnight. Olivia's epi drip is off! This is huge. She wouldn't even tolerate them changing the syringe yesterday, and now it's off?!? We're thinking that it was her adrenal glands doing some crazy stuff, so they put her on steroids. This has seemed to help tremendously.
Her platelets were only 13,000 this morning, so she is getting a refill today.
All of her blood gases have been great - good enough to start weaning down her vent. It's just that no one seems to know where to go from here on the vent settings since it's a newer experience for everyone.
Keep you posted...

Wednesday, April 22, 2009

Her own story.

Everyone always says that, medically, Olivia writes her own book. I could probably make millions selling a copy of that book to medical professionals everywhere. She always seems to do the exact opposite of what you would expect.
When she wakes up, her pressures drop. When you sedate her, her pressures go up. Weird.
So, they are going to do an echo today to see if her heart function is still doing okay and also run a couple of labs that may explain some things.
The night nurse said she had to give Olivia a boatload of sedation medication last night to get her to settle back down...I mean a boatload. She wouldn't even admit to how much! Not that we want Olivia to be subjected to so many strong drugs, but she really does eat it up like candy, so it's very necessary. Otherwise, they will probably put her back on a paralytic (I still don't want that).
If I hear any echo results, I'll be sure to pass it along!
News on the home front....we actually have a showing this afternoon. Crazy, I know. The sign just went up yesterday. So, we are by no means getting our hopes up. It's just going to be good practice for my mother-in-law to get used to having to get the house ready ;)

Tuesday, April 21, 2009


Olivia loves her drugs.
She's doing okay today. She had a couple more little episodes, but really only when they tried to change out her drips. All in all a good day!

It's official.'

Our house is officially on the market. Anybody want to buy it? I'm hoping the realtor decides to add something nice about it. Right now, it says nothing. I mean, it's not a great house, but it's served us well. He could at least talk about how clean it is, right now;)
Olivia had a fairly significant crisis this morning. She's still recovering from it. I personally think it was more mechanically related, but it ticked her off and she clamped down (pulmonary hypertensive crisis). Her sats were in the 40's and her blood pressure was in the 30's. Not so good. But, she got an extra dose of epi, some extra oxygen, a new vent, and some more drugs and didn't catch. They are getting ready to round on her shortly, so hopefully she recuperates by then so we can get back to where she was prior to her spell!
Keep you posted...

Monday, April 20, 2009


Not me.


She's still doing great. It's just that when she's awake, she pretty much thrashes back and forth. If she continues to be so mad, they have talked about re-starting the paralytic. I really don't want that. I'm loving seeing her awake. It's just a matter of keeping her happy when she's awake. She just seems so much more aware of the vent tube. I don't know why. It's been there for...well, forever.
Anyway, there aren't any huge goals for today. They do want to continue to try to wean down her epinephrine and/or her vasopressin. The doc wants her blood pressure in the 100's, but her normal blood pressure is usually only in the 80's, so I'm not anticipating much headway there. Maybe we'll be pleasantly surprised?!?
Regardless of all that, she's peeing great. She looks good. Her numbers have been good. Her oxygen sats are great. No complaints here.

Sunday, April 19, 2009

I have a good reason...

for not posting.

I was alone.

I don't remember the last time that happened, and I don't anticipate it happening again anytime soon. I went home to Macomb yesterday in the afternoon and I am just getting back to the hospital now.

First and foremost-Olivia is doing awesome! She is awake, awake, awake! She's happy most of the time, but they have been giving her extra sedation because she doesn't want to settle down.

Why did I go home, you wonder?

Well, it turns out that we are moving. Zac was offered a position as the principal at Dunlap Middle School for next year. It's an opportunity that came along at just the right time and one that we couldn't pass up. Zac accepted the position on Wednesday night. So, as you can see, it's been a really big, emotionally exhausting, crazy week.
We told the kids on Friday night. Jack cried. Brooklyn was ecstatic. We asked them where they would want to move if they could move anywhere in the world. Brooklyn chose Dunlap, Jack chose Philadelphia. We're going with Brooklyn's choice.
So, I went home to clean house and organize so we can get the house on the market. It's obviously not a great time to be selling a house, but we are hopeful it will all work out.
Zac told the MHS staff on Friday morning, which was really hard for him. We've made great connections and are going to really miss the entire community. We've always said that if we could pick up Macomb and move it closer to Peoria, we would. It just makes more sense for us to be closer to the hospital. I miss being a family!
Anyway, we are excited for our new adventure (well, most of us are). Now we just need to get Miss Olivia better so she can help pack!

Saturday, April 18, 2009


They've lifted the paralytic. She seems to be tolerating it just fine so far. I've seen her trying to peek at me here and there. It's good to see her moving and wiggling a bit.

It's even better to feel her squeeze my hand.

Holy cow!

So, what do you think of the new look? I was getting sick of the old one, so I emailed Zac's cousins wife and asked for a little makeover. I asked her yesterday...when she had time...and look at what she did!!!! I guess she doesn't mess around! Thank you so much, Judy! I love it!
Olivia had a good night. Her oxygen saturations were a little low, so they made a few changes on the vent. She seems to like it better. Otherwise, all is good. I'm still waiting to see if they are going to decide to wake her up today, which I'm really nervous about. We would be perfectly happy waiting until Monday when the regular doctors are around. We'll just wait and see.
The kids are this direction. Neither chose to sleep last night. I have a feeling they may be a little cranky today. I may be to.
Thanks again, Judy! You're awesome!

Friday, April 17, 2009


Forget a PO2 of 104.
She's gotten up to an incredible 122!
Her vent settings are coming down.
Her heart rate is down.
Her blood pressure is stable.
Her oxygen sats are okay.
They are thinking about letting her wake up a bit by taking off the paralytic (although, I'd rather wait until Monday).
Things are good.

Busy, busy.

No one has been around yet, but they've made a couple of changes on the vent. She had a record blood gas a little bit ago. The nurse even hung it up on her window for a little inspiration! Not that it means anything to most of you readers, but for the nurses out there, her PO2 was a whopping 104! Definitely worth hanging on the fridge...I mean window. Keep up the good work, Livvy!

Stable night.

Olivia had a really stable night. They were able to turn down a couple of things on the vent. Her numbers are all good and her blood gases have still been showing improvements. I wish I could explain more about the vent setting that she is on, but I don't quite know how to explain it. I think she basically inhales for 3.5 seconds and exhales for .3 seconds. It's strange to watch, but she seems to like it.
Her secretions have been much better. On Wednesday, another big concern was that her lungs were bleeding. As of yesterday, there weren't any signs of bleeding when they suctioned her. They haven't come around to do rounds yet, so I don't know if there are many plans for today, but I'll be sure to update when I know =o)

Thursday, April 16, 2009

Same old. Same old.

I thought I would update before I crash for the night. Olivia is still doing well. She's one amazing little girl.

Not much to report.

Things are still going well. There's not much to report, which is a good thing. Sorry I haven't updated, but I just figured if there wasn't much going on, there wasn't much to report. I got a call that apparently that wasn't okay. Sorry =o)

Quiet night.

Olivia seemed to have a quiet night. She really had no changes either way. Her blood gases continued to be within a reasonable range.
Yesterday was definitely a day of hard decisions. What it ultimately came down to was whether we want to put our trust in technology, which has a higher probability of failing us, or put our trust in God, who never fails us, regardless of the outcome. We are confident we made the right decision yesterday. That's not to say we won't make a different decision today or tomorrow, but as for now, we are good with how things are going.
Keep the prayers coming...

Wednesday, April 15, 2009


Sorry about the delay. The computer stopped working for a while.
It's been a whirlwind of a day. One that we don't want to experience again any time soon. Olivia is holding her own. They are trying to find a good combination of settings on her vent. It seems as though they have found a pretty good one tonight.
We are completely humbled and amazed by all the people rooting for Olivia today. We have felt every single prayer and we see them working. God works in amazing ways. We know that all too well. Please continue to pray.

Slow and steady

They are drawing blood gases on Olivia every hour or so and her numbers are very slowly but surely heading in the right direction. Everyone seems to have a hint of a smile on their faces when they look at her numbers. They have even been able to wean down a bit on her vent settings which is great. It's funny to think how these little itty bitty baby steps seem so huge today. You're prayers are working in miraculous ways. You have no idea the peace that has settled upon us. Thank you so much. Really.

God's plan.

Olivia's not doing well. Her pressures have been lower and there have been problems keeping her oxygen saturations up. They tried her on a different type of ventilator and that did not help. She's back on the original ventilator with different settings.
We had to make some very hard decisions this morning whether we wanted to put her on ECMO or not. ECMO is a heart/lung bypass machine. The entire ECMO team was up here and ready to go when she started showing signs of improvement. We then decided that the risks and possible complications of ECMO would outweigh the benefits. If she were to go on ECMO there would be a great possibility that she wouldn't come off.
Right now, we are definitely not ready to let her go but we are relying solely on God's plan for Olivia. We are trusting in Him completely. She has shown some signs of turning around, but she really, really needs your prayers right now.

Tuesday, April 14, 2009

Lung scan results

Olivia had her lung scan first thing this morning. She handled the field trip down there just fine. The results showed that the left lung doesn't quite fill up like it's supposed to, but the right lung actually looks a little normal. As Dr. Torres said..."Just another Olivia-ism." He didn't have a reason as to why her left lung doesn't fill like it should, but regardless of that, she does not have the platelet clotting problem in her lungs. So, we'll move on to step 2 - talking Dr. Fortuna in to stripping her pericardium. Sounds simple enough, right? He's crazy-busy this week, so it's just a matter of catching him at the right moment.
Other than that, Olivia hasn't had the best day. If she's awake, she's sad and coughing. She looks pretty puffy today and seems to be holding a lot of extra fluid. They are trying a few things this afternoon to try to get her back to her happy self. We are praying that it kicks in soon, because she's had a pretty miserable day.

Monday, April 13, 2009

Plan of Action

Our meeting went well today. We've developed a good plan of action. We were able to get some answers to our questions, even if they weren't the answers that we wanted to hear. The ultimate goal is obviously to get her home. Because she has had trouble getting off the vent, the plan for now is as follows:

1. Start Olivia on a drug called Bosentan. She was on this a couple of years ago, but it started to affect her liver, so she was taken off of it. It helps with pulmonary hypertension.

2. She is going for a lung scan tomorrow morning. They will inject dye and she will also inhale some sort of radioactive ingredient and they will get a picture of her lungs. It is a slim possibility that the platelets she has been getting could have gone into her lungs and formed little clots which could cause her the respiratory issues.

3. The cath lab results showed that the pressures in her heart all are equal. This is not normal. It is a possibility that she has constrictive pericarditis of the heart. Basically, the scar tissue may be constricting her heart and causing it not to pump correctly. We are actually hoping that Dr. Fortuna (cardiac surgeon) will agree to take her in and remove the scar tissue. It would be a thoracic surgery - not requiring the chest to be open or go on the heart/lung machine. It would still have it's risks, but would not be as invasive as open heart. There is no "test" that will confirm if she has this, but it would be necessary to rule this out.

4. If all this fails, she will need a trach. We weren't really expecting to hear that, but after hearing it and putting all things in perspective, we are definitely on board if it comes to that. If that's what it takes to get Olivia home and let her be a little girl, then that's what we'll have to do!

Regardless of all this, Dr. Torres (intensivist) is willing to try to get her off the vent one more time. This most likely won't take place in the near future. If she is going to go to surgery in the next couple of weeks, it would be silly to try to get her off the vent.
Also, we were able to speak with Dr. Al (St. Jude) and he said that Olivia is definitely no where near ready to start chemo. He said people live with MDS (pre-leukemia) for years without undergoing treatment. That is definitely on the back burner, and he will just treat her with frequent transfusions on an as needed basis.

We definitely feel a huge sense of relief knowing that there is a plan in place. We are praying big that Olivia can get over this little bump in the road within the next couple of weeks so we can get a step closer to home.

"For I know the plans that I have for you, declares the LORD. They are plans for peace and not disaster, plans to give you a future filled with hope." Jeremiah 29:11

Rainy Monday.

I'm sure glad we got the sun yesterday, because it's nowhere to be found today. Just an icky day.
Everyone had a great Easter. The Easter bunny found us...especially Olivia. She has a pink bunny in her room that's bigger than her, a basket full of goodies from Child Life, and lots of other fun stuff. She always gets so spoiled when she's up here!
She has had a good weekend overall. The goal is to wean down her Nitric Oxide from 40 parts per million to 20 parts per million by sometime this afternoon. She's been tolerating that just fine. Her platelets are back down again - from 38,000 yesterday to 18,000 today.
The results from her cath lab are done, but we are going to discuss them this afternoon in our family meeting. Dr. Shah was going to consult some doctors in Denver and New York and see if there are any other good options out there. Hopefully they can come up with something.
I didn't do a good job with pictures this weekend, but I do have a few from the Easter egg hunt. I'll try to post those later.

Saturday, April 11, 2009

Sunny Saturday

What a big weekend so far. Zac went to Champaign last night and stayed down there to run a half a marathon this morning. He claims it's the perfect distance and he loved it. You don't feel bad like you do after a marathon but you still feel like you've accomplished something. I'm just taking his word for it.
Jack went in late last night to meet up with Uncle Ty and Aunt Jenn and stayed at the hotel with them. Brooklyn got up early this morning to head in to the hotel so she could swim. Then off to spend a day with her cousins to do lots of Easter stuff.
Olivia is having a good day. No changes, but she is definitely interacting more when she is awake. She'll point to the pictures in her books and tries to point at my mask if I get close enough to her. She did get some blood last night, which always perks her up a bit.
And as for me...I'm spending time with Olivia today and then heading out to do some shopping...

Friday, April 10, 2009

Preliminary results

Olivia handled the cath lab like an old pro. It took quite a bit longer than expected, but they were able to get some good information. Dr. Shah was going to punch some numbers and discuss all of his findings with the cardiac surgeons on Monday morning. We are then going to have a family meeting in the afternoon and make some plans.
The basic results are that this is all her pulmonary hypertension. It was kind of disappointing to hear this, because we always hoped she had secondary pulmonary hypertension (related to her heart) instead of primary pulmonary hypertension. In other words, she has heart disease and lung disease - neither caused by the other, but two separate issues.
Dr. Shah was going to consult with some doctors in Chicago and New York that deal specifically with pulmonary hypertension and see if they have any other suggestions. Otherwise, just trying to manage with medication and praying that she is able to wean down on the Nitric Oxide and Flolan. Those are two medications that cannot be administered without a ventilator.
So, until Monday, we won't know much more, although the attending physician this weekend specializes in pulmonology in Chicago. I may just have to pick his brain=o)


Well, I caught some slack for not updating on Olivia yesterday, but I figure today I will be able to make up for it. She had a really good day yesterday. There really haven't been any changes. Since she is going down to cath lab this morning, it's kind of pointless to try to wean things down. She's been stocking up on platelets. They were the magic number of 13,000 again yesterday, but today they are all the way up to 23,000. She did get some blood on Wednesday night, which seemed to make a big difference in her numbers.
When she goes down to the cath lab, they are going to try to just use a paralytic and sedation. If that doesn't hold her, they will go ahead and use anesthesia. The goal is to get lots of measurements while they are in there, so it should take about 2 hours or so. I'll be sure to update if anything worthwhile happens during the procedure, but let's just pray that it doesn't!

Wednesday, April 8, 2009

Children's Miracle Network

On Sunday, May 31, 2009, Zac, Jack, Brooklyn, myself, and hopefully Olivia, will have the honor of answering phones at the 2009 Children's Miracle Network/Children's Hospital of Illinois Telethon at the Peoria Riverplex.

The Children's Hospital of Illinois cares for the sickest and most severely injured babies and children (newborn-18 years old). In 2008, over 5,000 children were admitted to Children's Hospital of Illinois staying over 30,000 days total and over 16,000 children visited the emergency room. Just think - Olivia can claim quite a few of those days! The Children's Hospital cares for each child with the greatest care and love in an environment that focuses on family-centered care and has the most medically advanced equipment and support programs available.

The Pediatric Intensive Care Unit, General Pediatrics, and the Neonatal Intensive Care Unit are top-notch. The NICU was just designated as the top performing NICU in the world for patient outcomes through the Vermont Oxford Network, a network of over 600 hospitals!

If you would like to consider making a tax-deductible donation, there is now a secure website where you can use you credit or debit card! You can put down that you want the donation made "In honor of Olivia Chatterton." Also, if you put our name in the comments box, we will get credit for your donation. Just follow the link below:

If you would feel more comfortable, you can also mail your donation to the house (920 Jamie Lane, Macomb, IL 61455) and we'll send a receipt back to you!

We sincerely hope that you will take the time to support Children's Hospital of Illinois on Olivia's behalf. Thanks so much for helping support Olivia, and the kids that have been touched by the people at the Children's Hospital of Illinois!

What a difference a day makes!

I can tell a huge difference in Olivia today. She looks really good. She's been really, really awake, but fairly content with that. Her numbers have been awesome. She's not having nearly as many coughing fits. She did get a brand new vent tube yesterday. Her original one was pretty much falling apart. Her platelets were back down to 13,000 like yesterday, so she got tanked up on some more platelets. She is scheduled to go to the cath lab at 8:00 on Friday. I had a lengthy conversation with Dr. Shah about her previous cardiac cath. I shared my concerns with him, but was able to answer lots of questions. He did say that she is definitely a higher risk patient going in because of her pulmonary hypertension, but because she is older and on all sorts of medications and machines, she should be fine. So, I'm feeling much better about things.
Brooklyn is done with school until next Wednesday, so she is excited for a little Easter break. Jack is taking tomorrow off, but we will be studying and reading all day to make up for it =o) So, he's looking forward to an early Easter break, too. We have big plans for the weekend. Uncle Ty (Zac's brother) and Aunt Jenn are flying in from Florida for the weekend. The kids are so excited to see them! It's going to be a short trip for them, so we are going to try to make the most of it!

Tuesday, April 7, 2009

Big plans.

Well, the doctors came around with some big plans for Olivia today. It's agreed that she is way to awake for being on a ventilator. Every time she wakes up and starts to wiggle, she gets into a major coughing fit, which sends her into a bit of a tailspin. They don't want to increase her sedation drips, because the ultimate goal is to get her weaned off the ventilator. If she's too sleepy, she won't want to breathe on her own. It's basically a vicious cycle. So, the plan is to increase the frequency of her methadone and ativan to every 4 hours instead of every 6. This way, she will get something every 2 hours by IV along with her Fentanyl and Versed, which are on continuous drips. She is also getting Benadryl to try to keep her more calm. I think she is getting another medication through her G-tube that will help "take the edge off."
She had an Echo done yesterday, and it didn't show any improvement from her last one. So, they have recommended that she take a trip to the cath lab on Friday. This will give a true picture of what's going on in that special little heart of hers. I am feeling a bit apprehensive about this, but I know it's the best thing to do. Last year, when she went down to cath lab she didn't behave and she basically had to be resuscitated. I never heard exactly why, or what happened, but it makes a little anxious. I'm sure she'll do great, and it will be nice to get some answers in regards to her heart.
Otherwise, she's having a great day...when she's asleep. They have been able to come down a bit on her vent settings even with all her coughing and secretions. The goal for today: Don't wake the baby!

Monday, April 6, 2009

All's well.

So far, it looks like Olivia has turned things around is true Olivia fashion! Her numbers have been perfect. Her lab tests have been at the other end of the spectrum...she went from having really, really high potassium levels to rather low levels within an hour. They've been having to treat her potassium all night to get it up to an acceptable range!
She slept great, but has been really awake this morning. She's been okay with that, but she seems a bit jittery sometimes. They cut down all of her sedation medications so abruptly yesterday so she is showing signs of withdrawal. They may have to go back up a little bit, or at least give her a little something to help with that. She's also extremely junky today. They are having to suction her quite a bit and she's coughing like crazy.
As much as I complained last week about uneventful days, it would be great to have one of those today!

Sunday, April 5, 2009

The good and the bad.

The Good:
Grandpa Rod got to go home today! Yippee!
We also got to go celebrate our nephew, Alais' 4th b'day! He wanted donuts instead of a cake. I've never seen so many donuts in my life!

The Bad:
Olivia felt left out. Her blood pressure had been sitting pretty low since I got here this morning. She had just gotten her Methadone, which usually causes her pressures to drop a bit, but not for that long. For a while, they thought she may just be too dry, but even after pushing lots of extra fluids, she wasn't responding as well as she should. Her potassium kept creeping up, as well. The low blood pressures and the kidney dysfunction caused her to stop peeing, which is how a person gets rid of potassium. After some further investigation, they realized her creatinine (kidney proteins, or something like that) had doubled since this morning. The theory as of now is that one of her antibiotics may have gotten to somewhat toxic levels, which caused her kidneys to start shutting down. The high levels of the antibiotic can also cause her sedation medication to become exaggerated, which in turn can cause low blood pressures. Bottom line is: they discontinued the antibiotic, gave her some extra medications to counteract some of the problems she was having, cut back her sedation, and went up a bit on the vent. Worse case scenario: they would have to do temporary dialysis. The doctor does seem to think this whole process could get worse before it gets better, but we're hoping she decides to snap out of it and be all better. As of right now, it's looking that way. She's been peeing again, her pressures are great, her oxygen sats are great, and her heart rate is down. Picture perfect! Keep you posted...

Definite keepers.

The kids and their apology letters, that is.

Here's a little background information. The kids were out playing the other day and started kicking an ornamental angel that we have in the backyard. Now, we have no attachment to this particular angel. It happened to come with the house and Zac just put it out in the landscaping. Anyway, apparently the angel broke and they sat down to write these apology letters:

"We were playing this game. My brother thought of this game. I'm sorry this happened, Mommy & Daddy, but my brother kicked harder than me. And that's it. Brooklyn"
(Can you see the sad face made out of the two "o's" in her name at the bottom?) Melt my heart!

"Dear Mom and Dad, I am sory because me and Brooklyn brock the angle outside. me and Brooklyn are very sory." Melt my heart again!
We have to have 3 of the sweetest kids on the planet!
Olivia and Grandpa are holding their own over here at OSF. Olivia is out of isolation. Again. We'll see how long she can make it last this time around. She's having a very sleepy day, which is good. I haven't gotten a report on Grandpa Rod lately, but when I went down yesterday, he looked a million times better. They are still just trying to get his kidney function back to baseline. He and Olivia are actually on some of the same medications, although Grandpa's doses are a bit higher =o) Hopefully, he'll be able to break out of here in the next couple of days!

Saturday, April 4, 2009

Great start.

So far it's been a great start to the weekend. Olivia is holding her own. Still no big changes, but she seems to be feeling good.
The Penny Carnival was fun. Well, tolerable. The kids were so excited that I picked them up from school, so that made my day right there. Jack was able to get his Wimpy Kid book, actually two. Then I came to find out he doesn't even want to read them. He just likes to draw the pictures from the cartoons inside. Oh well, I'm sure that counts for something. The four of us were able to go out to eat, too. It's been a while since we've all done that. Usually Jack refuses to go out, and it's just Zac, Brooklyn, and I. Then a few intense rounds of Uno Attack, and off to bed!
Today, we have one nephew's b'day party and tomorrow is the other nephew's b'day party! Big weekend!
We've also decided to extend our territory here at OSF. Zac's dad decided to get a room over here, as well! He's doing fine. He has an infection in his shoulder and it's caused some other little problems. He'll be up and going in no time. If you know Grandpa Rod, then you know the staff is getting a run for their money with him! He's quite the character! Regardless, it gives a nice break to have someone else to visit across the way! Extra prayers wouldn't hurt, though.
I also have the sweetest post when I get around to it. The kids broke something at home and wrote us the best "I'm Sorry" notes you can imagine. I have to get them so I can quote them perfectly.

Friday, April 3, 2009

Even less eventful.

If it could get any less eventful...
They are changing one of her IV diuretics to twice a day instead of 3 times a day.
That's it.
Oh well. It's technically part of the weekend today. We always know not much happens on the weekend.
It had been so quiet up here for the last few days and the place filled up to the max last night. So, please be sure to say an extra prayer for all the other little ones up here.
I'm going back to Macomb tonight. It's the big Lincoln School Penny Carnival and Book Fair. Jack's main focus is the Book Fair. He's been dying to get "Diary of a Wimpy Kid." Ever since he saw it in the magazine, he's been talking about it. Let's just hope they don't run out...

Thursday, April 2, 2009

Uneventful day.

Sorry about the lack in posting today. I got caught up in a book. It's actually not even a good book, but it sucked me in.
Anyway, Olivia has had a really good day. Her numbers have been great. She's been really awake and restless. She hasn't been sad at all, just restless. They may need to re-think her sedation. She usually likes to rub her eyes when she's awake, but she's been going for her vent tube. It would definitely not be in her best interest to yank that out quite yet! They do keep her restrained, but she wiggles her way down to where she can reach her face. She's one smart cookie!
Otherwise all is well!

Wednesday, April 1, 2009

How do we do it?

I can't count the number of times people have said to us..."I don't know how you do it?" I always give a version of the same answer...we have such a supportive family and friends, and at the time, we just do what we have to do to get Olivia better and focus on that.
I'm realizing more and more everyday that there's a whole lot more to it than that. We've always been amazed at how wonderful these doctors and nurses are. We know how much they care about Olivia, but after having our family meeting yesterday, it was so much more apparent. Dr. Deshpande (one of the intensivists) said he had called Dr. Torres (the other intensivist) after working hours to discuss Olivia and brainstorm. Her cardiologist, Dr. Shah, set up the whole meeting because he wanted to make sure we were all on the same page. He was worried that we may be having a difficult time being here for a month with no "real" answers. Her surgeon, Dr. Fortuna, thinks of her when he comes across different theories in research about heart kids going through chemo and always is sure to share these new thoughts with us. Her nurse, Bethany, spent time over the weekend researching different things related to platelet breakdown and chemo, even though she was not at work. It was her weekend off. The social worker up here, Sarah, checked on Olivia via a PICU nurse at church because she had been off for a couple of days, but noticed that people had been praying for Olivia on Facebook. The nurses from the cardiology office went out and bought Olivia a gift a few days after we had gotten here and the entire office signed it. The list goes on...
So, that is how we do it. We put Olivia in God's hands and He works through these doctors, nurses, and support staff to get us through each day. He sure did create some amazing people.

Dry as a bone.

Poor little Olivia. They've dried her out too much. She's withering away. Luckily, a little extra fluid will take care of that!
She's getting a little extra fluid today, and they were able to start her on a couple of new medications. It will take a few days to see if they are working, but the intensivists up here aren't banking on it doing too much. Apparently, the medications aren't very "strong." It doesn't hurt to start her on these, but they also aren't known to be miracle drugs either.
Her platelets are a whopping 47,000 today. It will be interesting to see how long she holds on to those!
It's the beginning of a new month, so that means all new residents. Again. It looks like an okay's sad that we are seeing some of them on their second rotation up here and we are familiar with them, but it's also nice that they are already a bit familiar with Olivia.
It's a big day tomorrow. Way back when I mentioned that Olivia had been nominated as a Miracle Kid for the Children's Hospital. We never heard anything more about it until last week. We were invited to the Children's Miracle Network Kick-off. It's tomorrow night, so Zac, the kids, and I are going to go and represent Olivia. They were sad to hear that Olivia wouldn't be making an appearance, and said she needs to be better by telethon day...May 31!