Saturday, May 31, 2008

but - an iffy day

Olivia's been acting up again today. She is still bleeding from her chest tube incision sites and her nose is bleeding. Her heart rate and blood pressure have been up and her oxygen sats have been so-so. They did an echo and a chest x-ray. The echo showed that her heart muscle is thick because it is having to work harder due to extra fluid. It's very important that she stop bleeding, get rid of some fluid, and not get any infection whatsoever. She is on 3 antibiotics that will hopefully guard her from infection. She is starting to settle down now and they are just tweaking things to get her back to baseline.

Finally - a good night.

Olivia had an awesome night (all things considered). Her incision was bleeding a little bit, so they are going to re-evaluate the amount of blood thinner she is on. They did give her some blood last night to bump up her hemoglobin. Otherwise, once they got everything figured out last night, it's been pretty smooth sailing.

Today will be spent tweaking meds and trying to get her potassium and peeing under control. All of her numbers look great, though! Best we've seen in a while.

Friday, May 30, 2008

Friday afternoon update

Olivia has had a pretty nasty day today - kind of like the weather. She has just been up and down on everything. Her pressures are either in the 150's or in the 50's. Her heart rate has been 150 or being paced at 100. Her sats have been anywhere from 50 to 98.
I think the thought is that she is too "wet." She has too much fluid in her lungs and the rest of her body. They have turned her back over to her tummy, which she always seems to like. There has been a lot of experimenting to get things where she likes them.

Friday morning update

Olivia had a really stable night. I didn't get any phone calls from the nurse, so that's always a good sign.

She is super puffy this morning, so they are starting her on a lasix/diurel drip. There are also a few other things they are trying to get under control. She has a temp and her heart rate and blood pressure have been up and down. She's also really congested today. Hopefully it all gets worked out soon.

Thursday, May 29, 2008

Good or Bad news...

Depends how you look at it.

Dr. Al came up from St. Jude. Olivia has what they call evolving leukemia. She doesn't have "full-blown" leukemia, yet. It's more or less premature leukemia.

On one hand - this is great news. She can have time to recover from heart surgery. They won't treat with chemo until she actually has leukemia, so there is no rush for her to get healthy (not that we want her to take her time).

On the other hand - now we just sit and wait for the leukemia to come. How frustrating. That's totally not one of those fun anticipation feelings. There is an itsy bitsy possibility that she will always have evolving leukemia and it won't develop into actual leukemia. It could be weeks, months, or years before she actually develops it. If I understand it correctly, 2%-3% of Olivia's cells have leukemia. They don't consider it leukemia or treat with chemo until it hits around 20%. St. Jude will continue to monitor her blood work. If there are no significant changes, they will do another bone marrow biopsy before she gets off the ventilator. Then we will go from there. So, as of now, the leukemia is on the back burner and we can concentrate on healing from surgery. Oh, they did determine that she has the M-7 type of AML (sounds like a firework to me). Anyway, it's either caused by an abnormality in chromosome 7 or it causes an abnormality in the chromosome 7.

They actually removed her 2 chest tubes today (used for draining fluid from the heart). It's always good when they take things out instead of put things in. She did get her feeding tube put in and a third antibiotic started just to keep her "protected." They have been going up and down on her ventilator settings and on her blood thinner. She isn't tolerating it well when they suction her, but as long as no one touches her, she does great.

Any suggestions?

Yesterday when Olivia had her little "episode" in the morning, they ended up having to "bag her." This is when they manually pump the 100% oxygen into her with the "bag." Anyway, Zac has decided he doesn't really like the terms they choose to use. Personally, I prefer "bag" over the alternative of "resuscitate." So, I thought we would see if anyone had any suggestions that we can pass along to the nurses. I thought it would be more family friendly to say something along the lines of "adding a little pep back in to her."
It's funny to think of all the times they have had to "resuscitate" Olivia, yet she has never actually stopped breathing, nor has her heart ever actually stopped beating. So, we are merely looking for some fun suggestions to pass along to our nursing staff. This way, Zac will feel a little more at ease when they are discussing the life-saving measures they are using with our daughter.
I also heard a rumor that internet service was down in Macomb. The fiber optics probably exploded or something from all the people checking on Olivia this week!

PS - they just turned her over from her belly to her back. She seems to be recovering okay from it. It did take 5 people in here to monitor, turn, sedate, oxygenate, etc... She loves all the attention.

Thurs. morning update

Olivia had a pretty good night last night. She has a whole lot of junk in her lungs, so she is requiring a lot of suctioning, which she doesn't care for too much. They are going to give her another quiet day today. They did put her on her tummy and she seemed to like that a lot. Around 10:00 a.m. they are going to turn her back over and put a feeding tube in to start feeds that way. She's also starting to get really puffy, so they are increasing her diuretic. They are still pacing her heart on a temporary pacemaker to give her a little break and she is still on the paralytic. Other than that, just try and keep things status quo.

We haven't heard back from St. Jude Memphis, yet. Hopefully sometime this morning.

Wednesday, May 28, 2008

Wednesday afternoon update

Thought it would be a good idea to give your F5 and "Refresh" buttons a break today. Ever since Olivia's episode this morning, she has been doing great. They did start her on a blood thinner because of the mitral valve replacement.

Everyone is presently surprised with how well she is doing. They are starting a new medication (ordered by St. Jude) to help control her uric acid levels. I'm sure I have been leaving out so many details, so I may try to give an entire recap in the next few days.

Otherwise, she is doing well and we are praying for another good night.

Morning scare

Olivia had a fairly stable night, but had some issues this morning. Ultimately, the final thoughts are that she was under-sedated and her nitric oxide wasn't working properly. They were about 10 seconds away from starting compressions when she decided to come around.

We had a long talk with Olivia's doctor from St. Jude, and he feels like he should have a better idea of her exact diagnosis by later tonight or early tomorrow. He will be checking with Memphis this afternoon.

Otherwise she is pretty stable right now. Regardless, thank you for all the continued prayers today for a quiet and peaceful day.

Tuesday, May 27, 2008


Thanks be to God! (And all the docs and nurses, of course) She looks awesome - all things considered. She is hardly bleeding at all and all of her meds are at about the same place as this morning. Her vent settings aren't up too much and everyone is very pleased with how she is doing so far. The next 24-48 hours will be touch and go with getting everything where it needs to be.

The mitral valve was replaced wth an artificial valve. Her tricuspid valve didn't leave much to be desired, so it most likely will need to be replaced as well in the far, far, far future. They put a few stitches in there to see if that would help, but it didn't do too much. The subaortic stenosis was also taken care of.

We'll hope for a very quiet night tonight. She was able to open her eyes and wiggle a little bit right before the paralytic kicked in, which was good to see. They'll let her start waking up tomorrow.

Have a wonderful and peaceful evening - thank you, thank you, thank you for all you have done today.

The wait is over!

Nicole here....reporting for Julie:

Olivia is back in her room, and Julie and Zac are waiting to meet with the surgeon. They will be with Olivia soon! She will post later.

Almost done.

Sounds like these are going well. They are making their way towards the floor. In about 15-30, we will head into a conference room and wait for the surgeon to come in and tell about the day. Then we will finally be able to go down and see her.

Off Bypass

Olivia is off the heart/lung machine. The doctors will now double check their work and get all of her bleeding to stop. The next call should be that they are closing her chest (unless they choose to leave it open) and then she'll be up. It can sometimes take a while to get all the "little bleeders" to stop, so it may still be a little bit.

4:00 update

Zac thinks it's bad that I'm blogging this, but I know everyoneis waiting to hear. Not much news, though. The most recent update is that things are still going well. They're still working away. The original thoughts were 6-8 hours for surgery, but I figured more like 8-10. We are moving up on 8 hours, so hopefully not too much longer.


Things are going well. They are just getting ready to insert the valve. It had been up in the air as to whether they would try to repair or replace the valve, so this means they have chosen to replace it. Our next update will be in 2 hours or so unless they get her off the heart/lung machine before that (which we don't anticipate).

Bypass Machine

Olivia is on the bypass machine (heart/lung machine). They will now start on the repairs. They said things are going well.


As of 9:10, they had made the incision. Next update will be when she goes on the heart/lung machine. It may take a little while for this because they have to get through all of the scar tissue from her last 2 operations.

It's a go.

Olivia went in to the OR right around 8:00 am this morning. Our next update will come when they make the incision, which could be in about an hour and a half. She had a really good night and was in great spirits this morning - happy as a clam. Thank you for continuing to pray for Olivia and the entire family today.

Monday, May 26, 2008

Completely Overwhelmed.

I always LOVE reading the comments that you all leave on the blog or send via email. It truly overwhelms me to see the support we have from all of our family, friends, and complete strangers. I wanted to share a few more things that have touched my heart over the last few days. They are definitely worth sharing (hopefully those involved don't mind) and this way I will have them documented forever.

A friend's 7-year-old son held a Snack Shack for Olivia in Macomb. They advertised throughout the community and had very steady business. This was completely his idea to raise money to buy Olivia books and plant flowers for another family at our church who is going through some medical issues, as well. You can read more about this under Kristin's blog to the right. (I don't know how to link you there - sorry)

During the Snack Shack, a little girl that we met one time brought a red ticket to give to Olivia. She had been saving it from the last Penny Carnival and wanted to be sure Olivia had it so that she could have something to look forward to when she came home from the hospital - going to the Penny Carnival next year.

My sister works for the American Cancer Society, so her kids understand the basics of cancer. She was telling my niece about Olivia's leukemia and this was her comment: "Maybe when I donate my hair to Locks of Love, Olivia can have my wig." I'm sure she would look beautiful with blonde hair!

And, of course, it's not only kids that have touched my heart lately.

One of my best friend's from college (we'd lost touch over the years) was near Peoria over the weekend and went out of her way to find us. We weren't at the hospital at the time, but she left a note, and her numbers to I could contact her and we were able to have lunch and visit for over 3 hours.

One of the intensivist's from up here called me Saturday morning on his day off from a weekend away with his family to see how we were doing. He had heard about Olivia's diagnosis and he said it just hit him like a brick. He asked lots of questions and reassured me that he would be here on Tuesday for surgery. He and his family were thinking of us and praying for us as well.

One of the residents told me that some of the nurses were talking about taking their vacation time to come down to Memphis to be with Olivia. Their own personal vacation time.

Many nurses were in tears after hearing about Olivia's latest hurdles.

One nurse is requesting to come in tomorrow on her day off to admit Olivia back from surgery. She said she just needs to be here - I told her she would have to keep herself composed enough if she were going to be taking care of Olivia!

These are just a few of the things that have amazed me over the last week or so...

Thank you for loving her so much.

Sunday, May 25, 2008

From the Beginning (Part One)

Since we have had so many new people joining our blog, I thought I would share Olivia's beginning. Many of you have heard her story many times, but I think it's a miracle story that helps explain a little bit of where we get our strength and courage.

Back in January of 2006, we found out baby #3 would be joining us in early September. Things were going great and in April, we went in for an ultrasound. We took the kids so they could see their new little baby, too. When they escorted the kids out for suckers and brought in the doctor (we were seeing a midwife), we knew something was up. The doctor told us that the baby had something called cystic hygroma. This was a growth that was on the back of the neck. In all the cases she had seen, the baby hadn't made it. She referred us to Peoria for confirmation.

We started seeing a perinatologist in Peoria for 3-D ultrasounds. The first visit confirmed the doctors thoughts. The perinatologist did ask if we wanted to consider terminating the pregnancy since the chances were slim that the baby would make it at all. With our immediate "no," he said he would continue to monitor the baby and pray for us. He had seen a handful of babies that did survive during his many years of practice. In most cases, the baby died in utero from congestive heart failure from trying to fight off the cystic hygroma. Even if the baby were to somehow make it to term, there was a 50/50 chance for some sort of chromosomal disorder, Turner's syndrome, and many other complications.

This is when the first of the miracles happened. We were at a loss. We were spending the first few days just waiting to lose her. What else could we do, but put our baby into the Lord's hands.

For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Psalm 139: 13-16
We would visit Peoria once every 2-4 weeks. For the first 3 or 4 visits, it was the same. No change. During the ultrasounds, the doctor would not speak to us, but would relay notes to the nurse and discuss his findings with us afterwards. In our June appointment, when he was dictating to his nurse, I swore I heard him say: cystic hygroma has dissipated. I'm no Einstein, but dissipated sounds a lot like disappeared. This is where the second miracle happened.
The cystic hygroma was gone.
The heart didn't look quite normal, so we were sent to Olivia's current cardiologist for an ultrasound of the baby. The baby was then diagnosed with AtrioVentricular Septal Defect. It would be repaired after the baby were born - hopefully at about 3-4 months of age. We could otherwise continue on with a "normal" pregnancy. We were discharged by the perinatologist and sent to a high-risk OB in Peoria because of the heart defect.
Fast forward to August 2006. We were scheduled to be induced on August 28. This way we could be sure to be in Peoria with all the necessary medical staff present for the baby's arrival. On August 27, we first learned that our baby was going to have a mind of it's own...
I'll have to post part 2 later - this is getting to be a long story.
As you can see, we did put Olivia in the Lord's hands long before she was born. Everyone wonders how we handle these things - how we take the bad news with a sense of ease. Often times, I would love to wear a big sign that says "I really do care what you are telling me, but the Lord is in charge and we are just waiting to see where His plan takes us next. " He holds Olivia in the palm of His hand. She has never been alone in this, and neither have we.

Saturday, May 24, 2008


Sorry about the delay. Jack and Brooklyn were monopolizing computer time by playing Webkinz all night. I didn't ever get my turn at the computer.

So here's what we know (some of this may be repetitive)...

Olivia bone marrow showed a significant cluster of cancerous-looking cells. The dr. sent the sample to St. Jude Memphis yesterday. Being a holiday weekend, the results most likely won't be back until Tuesday or Wednesday. The Dr., his colleague, and the pathologist feel strongly that she has AML.

AML(acute myelogenous leukemia) and ALL(acute lymphocytic leukemia) are the 2 types of cancer that they look for. AML is less common of the two, but more common in children with Down syndrome.

AML is treated with chemotherapy over a 6 month period, whereas ALL is treated with the same amount of chemo over 2 years. So, it is definitely more intense chemotherapy that makes the kids very, very sick.

Ideally, they would want to start chemo now, but because of her heart, she would not be able to tolerate it at this point. It is very important to get her heart fixed as soon as possible and get her recovered from that prior to starting chemo treatments. The dr. mentioned starting a low dose of chemo that won't make her sick to sort of suppress the cancer sometime after surgery.

Once she has recovered from surgery (hopefully within 3 weeks or so), we will have to go to Memphis for the induction part of her treatment. Most likely we will have to stay there for a couple of months, but maybe we will be pleasantly surprised and it will not be that long. We can continue the rest of the treatments here in Peoria.

I asked the surgeon if it would be beneficial to go ahead and replace her mitral valve as oppose to repair it, so we know it is functioning to it's fullest potential. He won't know till he gets in there on Tuesday, but he will not be hesitant to do so. This would require blood thinners, which is not ideal for cancer patients, but they could work around it.

The fact that Olivia is an infant and the fact that she has Down syndrome are two bonuses when it comes to chemotherapy. People in these two categories handle chemo much better than the Average Joe.

The fact that she has cardiac and pulmonary issues, is not a benefit. The chemo will make her very sick and more susceptible to infection, which will make her illnesses much worse than the Average Joe.

The dr.'s will watch her blood counts, electrolytes, uric acid, and some other things very closely. She is getting some platelets this morning.

We are doing really good with all this. We thought she may have leukemia back in February and had prepared our hearts and minds for it. It's hard to think that she is going to have to go through all of this, but she's tough and will fight like she always does.

So, when I was leaving last night, I stepped in the elevator and saw this verse hanging on the wall.

"Great peace have they who love your law, and nothing can make them stumble."
Psalm 119:165

We will continue to draw from Olivia's strength and be strong for her. Another bump in the road. We have never once asked why this is happening to our family. We know why. God never gives us more than we can handle and He will always help us handle what we are given. That hasn't changed. Olivia is still happy and smiley and kicking her little feet this morning. That hasn't changed, either.

Friday, May 23, 2008


The Dr. from hematology came in about 4:30 or so and said that he is fairly certain that Olivia does have leukemia. He sent the sample to St. Jude's in Memphis. As of right now, he is very confident that she has the Acute Myeloid Leukemia form. I think it branches off into three different kinds from there, but we won't know that for a couple of weeks. St. Jude Memphis should be able to confirm the leukemia on Tuesday.
They have decided to definitely do her heart surgery on Tuesday to get her heart in optimal working order before starting chemotherapy.
I'll write more details later on tonight. I just need to get out of the hospital for awhile and process everything. Once I get all the details in order in my head, I'll sit down and write in more detail. We are doing fine with all of this, it just needs some time to sink in. Please feel free to post any questions at any time. It's going to be a very, very long and bumpy road through all of this and I just want to be sure everyone understands exactly what Olivia is going through.
As always, Thanks for joining us on our journey.

Summer vacation!!

No news so far this morning. Olivia had a good night. She was able to get her catheter out and was given some extra diuretics to help get some of her puffiness away. I guess that's exciting news for the morning - no more peeing in a bag.

Today Jack went to pick up his report card, and Zac is bringing him to Dunlap tonight. It's officially summer vacation for the kids! Yippee! I'm very excited to have the kids here. I feel like I haven't seen Jack in so long. Anyway, he definitely had an outstanding first year of school and is very excited to be a first grader next year. Hopefully, we can keep him somewhat entertained for the summer and he doesn't get too bored.

Zac is on a 12 month contract, so he doesn't really get a summer. Too bad. Anyway, I'll let you know when I hear from hematology about the preliminary bone marrow results.

Thursday, May 22, 2008


Olivia didn't handle her last bone marrow aspiration very well, so it was nice to see her tolerate something for once. She handled the whole procedure like a champ! She has gotten a fever again, but I'm sure it's just from the stress and pain of it all. The hematologist said the aspiration was successful. Last time they were not able to get the spongy part of the bone out for a complete study, and they were able to get it this time. They went in at two different sites which also gives a more accurate sample. We should know the preliminary results in the morning which will tell if she has leukemia or not. There will be more results in a few days, and the final report won't be for a couple of weeks. Anyway, even if everything comes back completely fine, at least there will be an answer that this is just how Olivia likes to roll. I'm just glad she tolerated the sedation and entire procedure so well.

Bone Marrow Biopsy

The bone marrow biopsy is scheduled for today at 2:00.

More stuff

Olivia had a good night. Another uneventful one, but we like those. Her urine culture was negative, her blood cultures haven't grown anything yet, and her sputum culture came back with some bacteria. The intensivist claims she has pneumonia of some sort. The cardiologist could care less. He wants her heart repaired last week. So, we are "tentatively" planned for Tuesday of next week. They don't want to do it tomorrow since it is before a long weekend and there wouldn't be the staff here in case something were to go wrong.
Apparently, Olivia has some other stuff going on. She is getting another transfusion today because her hemoglobin was down to 7.7. All of her other blood counts were low, too and there is something showing up called "blasts" which are like immature white blood cells. After consulting with the hematologist, there is talk of doing another bone marrow biopsy. Ugh. He is going to discuss it with the cardiologist and the intensivist and make a decision as to when to do it. They mentioned leukemia again, but the hematologist seemed very confident that there were no signs of this from the last biopsy. We'll see.
Regardless, it's nice to have another date set for surgery. It's going to be a long weekend waiting, but hopefully Olivia will stay stable enough to actually go in this time.

Wednesday, May 21, 2008

Roller Coasters

I can't even begin to think of the last time I slept until lunch. What a crazy feeling. I definitely needed it, but what a waste of a beautiful day. I could have at least been doing something productive, like waiting for updates on Olivia's surgery! Just kidding. It's all worked out for the better anyway. The surgeon was in the operating room until about 1 in the morning with another patient and had to work on him again today, so we would have been bumped anyway. It's much easier to take when it's Olivia's doing as opposed to another patient's.
So far all of the cultures have not grown anything, which is a good sign. Final results won't be back until tomorrow night though. She hasn't spiked any high fevers today. I think the highest has been around 100. They have already taken her off the paralytic, turned off the epi drip, and gone down on some vent settings. They are trying to get her back to where she was before her little episode last night and see how things go. I can't imagine we would be able to go into surgery until next week, but we'll see what the surgeon has scheduled and what he thinks about all of this.
Besides all of this, sorry to make you all join us on this roller coaster ride. We know how it makes us feel sometimes, and it doesn't seem quite fair to take you all along for the ride, especially if you don't like roller coasters.


Olivia's not going to surgery today. Turns out she spiked a fever around 7:30 last night. Then about 12:30 this morning she dropped her pressures into the 30's, dropped her sats into the 30's and took some big setbacks. She is paralyzed again, up to full capacity on her nitric oxide, up on her vent settings, back on an epinephrine drip, and on 2 antibiotics, again. They drew cultures, so we'll wait for results of those (up to 48 hours or more).
They had determined late last night that she wouldn't be going to the operating room today, so I don't know if she got mad and was trying to voice her opinion, or if this is all a response to the fever and she wanted to make sure they weren't considering taking her in. Either way, she's waiting.
I guess she decided she wasn't as ready as we were. It's going to be a very hard wait until she is ready again.

Tuesday, May 20, 2008


People truly amaze me.

People want to help in any way they can. Because of this we have learned to say "yes" and let them help us. We've learned that these people feel just as helpless as we do sometimes.

People from our church took a collection for our family on Sunday. The person who gave it to me said I couldn't be mad at her and I couldn't say "no" because she knew this wasn't allowed according to one of my previous posts! (Lucky for you - I don't stay mad long ;)
People have absolutely no idea how much these things mean to us.

People don't realize how hard it is for us to accept these acts of kindness. We are truly blessed and humbled by your generous acts of kindness.

People have been inspired and blessed just by knowing Olivia.

People continue to keep our entire family in their daily prayers, even when Olivia is not in the hospital.

People we have never met have done extraordinary things for our family. A neighbor brought a beautiful bouquet of flowers for us to enjoy. This was the first time we'd met (well, technically she met Zac's mom).

People have inspired me. I pray that one day, we are able to give back.

God chose us to be Olivia's parents because He knew He would be able to help us handle whatever was brought our way. He also knew, way before we did, the amazing support system we would have from our family, friends and community.

People truly amaze me.

Sounds like it's a go...

So far, so good. Olivia is still scheduled for tomorrow. She is definitely ready to go. Since I got here this afternoon, she has been kicking her precious little feet around and giving some of the biggest smiles I've ever seen. It will be a while before we see that again, so I'm enjoying every minute of it. She finally decided to take a nap, so I thought I'd update the blog.

I'm assuming Olivia will be the first case tomorrow. She is usually an all day case. I don't know, however, what time that will be. It's been over a year since her last surgery, so I don't remember all the details of the day. I think the hospital clergy come and update us about 4 times: 1. When they make the incision, 2. When she is put on the heart/lung machine, 3. When she gets off the heart/lung machine, and 4. When they are closing.

Then, the pastor will come and take us to a conference room, where we will anxiously watch under the door for them to wheel her by. We then wait for the surgeon to come in and tell us how it all went. The hours between updates are completely nerve racking. Because we haven't talked directly to the surgeon, yet, we don't know how long of a procedure this will be. I'm sure it all depends on if he will have to do both the subaortic stenosis and mitral valve or just the subaortic stenosis.

Anyway, as we get updates tomorrow, we will be sure to post as soon as we know anything. Please keep praying for all the nurses and doctors taking care of her tomorrow and for Olivia to stay strong through the entire process. She is so sensitive to everything. The surgery itself doesn't make me as nervous as the sedation and aftermath of the operation. We've got quite a fighter on our hands, though.

She'll do fine.

Monday, May 19, 2008

There's a new doc in town...

They've been down an intensivist up here for close to a year. Most days, it's pretty obvious. The 2 doctors are incredibly overworked and their stress has seemed much more noticeable. They were finally able to hire a new doctor. He came up this weekend and is helping out here and there until he starts full time next month. I absolutely love our 2 doctors and they seem almost giddy excited to have the extra help, so I'm trying really hard to be accepting of "the new guy." However, for the last two days of rounds, he doesn't come in and tell us any plans for the day. I haven't even seen him come in and assess Olivia at all. Maybe he comes in the middle of the night to get to know her, when I'm not around. Regardless, we like to know what they plan to do to Olivia for the next 24 hours until they report on her again. This is definitely going to take some getting used to.
Anyway, Olivia's cardiologist popped in and said that she is still tentatively scheduled for Wednesday, unless something comes up. A person sure learns to be flexible up here. Maybe this. Maybe that. Tentatively. Blah, blah, blah.
So, Olivia had a very uneventful night (which is good). No plans for today. Just keep things status quo!
I'm taking Brooklyn home with me this afternoon for her end of year potluck at school. I plan to sleepover and then take her for her last day of school. Afterwards, we'll pack her up and move her in to Grandpa and Grandma's house with me until Olivia is ready to come home!
Therefore, I may not update until tomorrow afternoon, so don't be concerned :)

Sunday, May 18, 2008

Lazy Sunday afternoons

It's about 6:30 in the evening and I've just stepped foot into Olivia's room. I took the morning off to spend time with the kids (and get a little nap in). My mom did the morning shift, Zac did the afternoon shift, and Grandpa and Grandma C. stayed into the early evening while Zac, Jack, and I went out for Chinese (Shhh...don't tell Brooklyn). Now the boys are heading home and Brooklyn and I will hang out for another night.
Anyway, Olivia is doing fine. Still just hanging out. They put an NG tube back in through her nose. She had some sort of air bubble somewhere, so this will help get rid of extra air. She is also getting blood again. Her hemoglobin dropped again so this should bump her back up for a while. Her vent settings have been weaned down a little bit, but they shouldn't be trying to get her extubated prior to surgery now. That would be silly. So, tomorrow is Monday. The doctors have their cath conference and should have a better idea about surgery. We are still planning on Wednesday, so we'll hope the doctors are too!

Saturday, May 17, 2008

Go, Speed Racer!

Today is definitely not one of those days that's easy to sit around the hospital. It's finally a warm and beautiful day. I spent the morning with Olivia and then met up with the kids to take them to see Speed Racer. We had heard horrible things about it, but Jack was insistent on seeing it. I didn't think it was that bad - probably not appropriate for the kids - but they didn't seem to pick up on that. Anyway, it was a really nice afternoon out.
Olivia is still having problems weaning down on her vent settings, so no extubation today.
I'm thinking she's going to stay on the vent through surgery. It makes more sense to me, but what do I know? Her hemoglobin is dropping again, but they are hoping they don't have to give her another transfusion before surgery. If it drops much more, I doubt they'll be able to wait. Otherwise, all is well!

Friday, May 16, 2008

Plan B

Looks like they are not going to extubate today. She's was doing great on her vent settings, but they had to go up again throughout the night. Nobody has mentioned making any other changes on the vent anytime soon. She's been vomiting quite a bit for some reason or another. They are going to replace her feeding tube for about the 4th or 5th time. They also put in an NG tube to help drain her tummy. They are still going to try to wean down the nitric oxide and maybe get it completely off by tomorrow.

Otherwise, all is well with Olivia!

I also talked to Olivia's case manager from the Dept. of Specialized Care for Children and she said that once the insurance company drops her, she will be covered by All Kids. That was good to hear. It sounds like it may take a lot of legwork, but that's okay. It keeps me busy.

Thursday, May 15, 2008

Olivia's way

I think Olivia ended up poopin' around 8 times yesterday. So, they are holding her laxatives until further notice. She has decided not to follow the doctor's plans and hasn't tolerated weaning down on her vent. However, Dr. T. is trying to stick with his original plan and make some changes today. The residents are kind of scared of Olivia (rightfully so) and they aren't as gutsy as Dr. T. He came in and flat out turned off her epi drip, just because. She seems to be tolerating it well. (I think she has a special place in her crazy heart for Dr. T. She always seems to cooperate for him!) They will continue to try to wean down her nitric oxide with the hopes of getting it off tomorrow morning. We'll see about any vent changes. So far, I think the plan is still to try to extubate tomorrow sometime. Right now, she looks perfect.

I talked to her cardiologist a little bit this morning. He is under the impression that Dr. F. (the surgeon) will take care of the sub-aortic stenosis first. While he's in there, he should be able to tell if that decreases the mitral valve regurgitation. If by some miracle of a chance he thinks that takes care of it, then he should be able to be done. However, most likely, he will then try to repair her mitral valve. If he's confident that it's a good repair - done! If not, then he will go ahead and replace it with an artificial valve - definitely not the best case scenario, but manageable with blood thinners, frequent blood thinners, and future surgeries. We'll just cross that bridge if we come to it. If the Lord's path steers us away from that bridge, we wouldn't certainly wouldn't mind.

Do you think Wednesday will ever get here? I would love to go to sleep tonight and wake up in the morning and see the calendar read Wednesday. At least she should be in the best possible shape going in - healthy and strong!

Wednesday, May 14, 2008

Field trip, productivity, and lifetime maximums

The field trip was good. It's actually an impressive zoo for being in the middle of nowhere. Lions, tigers, and even bears, oh my! Jack was acting rather strange. I know most kids do when their parents are around, but he kept wanting me to hold him. He's 6 years old, about 60 pounds. I'm not going to carry him around the zoo. I should have threatened to get the stroller out for him. Knowing my luck, he would have thought that was great. Otherwise, he spent most of the time wrestling with the other little guy in our group or straying away into unchartered territory. Oh well, it was still fun.

Olivia's had a productive day. She's pooped twice, had a bath, had her tube re-taped twice, made some vent changes, weaned down a little on her nitric oxide, gotten some blood, puked once (didn't know that was even possible on the vent), and re-started one of her medications. If she decides to go along with the master plan, the doc wants to extubate on Friday. At first I thought it was kind of silly to extubate when she would be put back on the vent for surgery on Wednesday, but apparently it's better to have her breathing on her own when she goes in for surgery - keeps her lungs in proper working order.

***Note: you are not allowed to read this part if it's going to make you think we need money, a benefit, charity, or anything of that nature. If we ever do need such assistance, you'll be the first to know! I just wondered if anyone had any thoughts on the matter. So don't read any further if you think you wouldn't be able to control yourself.

So, we got "the call" yesterday that Olivia has pretty much reached her lifetime maximum and we need to start looking into other options. I applied to have Olivia put on public aid, but I don't know how they decided if she qualifies. Nobody seems to know what happens when a child runs out of insurance. Doesn't somebody have to help pay, or do we just carry millions of dollars worth of medical debt to the grave? She is covered by the Department of Specialized Care for Children for anything heart related. But, her last 3 admissions haven't been cardiac. This one will be after it's all said and done, but who know about the first 2 1/2 weeks of our stay. Anyway, does anyone have any suggestions or similar circumstances?

By the way, did anyone actually skip the above paragragh, knowing full well they wouldn't be able to control themselves?

Field Trip

I'm taking a field trip away from the hospital this morning. Jack's class is going to Brown's Oakridge Zoo in Smithfield today and I get to join them!

Olivia's CRP test result came in at 11. This is still trending downward - good news!

She also had a really good night. No changes, really. They continue to make small changes with the ventilator and with her nitric oxide. If she tolerates the changes, Dr. T. said he may go ahead and extubate prior to the surgery. If we have to wait a full week until she goes in, she would have to be completely snowed in order to keep her from extubating herself. So, they may try to get her off the vent and take a little holiday from that until surgery. She will have to be put back on the vent for the operation, so it's just a matter of keeping her as healthy and comfortable until that day comes. Seems to be it would just be easier to take her on in now, but I'm trying not to be pushy. It's good not to be in a critical and emergent situation. We can wait patiently for our turn. Or, at least we'll try.

Anyway, I'll update more this afternoon and let you know about the exciting zoo trip.

Tuesday, May 13, 2008


I just got a frantic phone call making sure everything was okay with Olivia because I hadn't posted yet today. Sorry! I got involved in a new book Zac got for me at the library and I had not even opened the laptop yet today. I sometimes forget Olivia has quite an extensive fan club out there.

Anyway, she's having a really good day. They did another one of the CRP lab tests, but I haven't heard the results yet. They were able to go down on some more vent settings. The surgery is tentatively scheduled for next Wednesday. As always, plans may change. I have a feeling they would get pushed back if they needed to fit someone in during an emergency case. Olivia needs her heart fixed, but it's not an emergent situation, if that makes any sense.

If you could only see her now. She's got both legs propped up on the side of the crib. She moves all over the place. It's hilarious! As soon as I get my camera in working order, I'll have to get a picture. I misplaced my camera battery charger, so I just have a dead battery. They don't sell a replacement at WalMart, so I had to order a new one off of Ebay for $1.99. Hopefully it's gets here soon. Anyway, all is well. Once again, I apologize for the lack of information this morning, but if you ever need a good inspirational story with a football background, check out "Between Sundays." I'm really liking it.

Monday, May 12, 2008

Lab results

Olivia's lab test came back at 15. She was at 19 on Saturday, so she is at least trending downward. The doctors would like to see it around 5. The test basically shows the amount of inflammation that is in the body that could potentially be caused by an infection (at least that's my understanding of it). It's really an iffy thing, but her white count was up last week, but went down by Friday. Then Saturday, it was back up and she spiked that temp. I would imagine they will re-test on Wednesday or so and then make a decision from there. It's looking more like the beginning of next week though. If that's the case, we are going to need a lot of patience and a lot of sedation (for Olivia - I don't need it quite yet) to keep everyone sane for the next week. I just feel like the longer we wait, the chances of her picking up something else up here increases and our stay obviously gets longer, as well.
Macomb didn't have school today, so it was a nice long weekend with the kids - just what the doctor ordered. My dad took them on a picnic and to play at the park this morning. I met tem there and we headed on over to Chuck E. Cheese's. There were only about 4 or 5 other kids there and we had a good time. Once we ran out of tokens, we went on back to Grandma and Grandpa's and played a little baseball and kickball while we waited for Daddy to come pick up the kids. So, they are heading back home and I'm in visiting with Olivia! The school year is definitely winding down with Jack having a fieldtrip tomorrow and Wednesday. Brooklyn only has 3 more days of school left altogether. Summer is almost here!

Don't know much

Livvy had a good night. She seemed to settle down a little bit. When I came in this morning, she was clapping her little feet together, looking at me with those beautiful brown eyes, and gave me a big smile as she was holding on to her vent tube. They are going to re-tape her tube this morning. They aren't able to see the bottom of it on the x-ray, which means it's pretty far up there. She also needs her TPT (feeding tube) replaced. It's curled up in her tummy and needs to be down further. They made some significant vent changes throughout the night and this morning, which really surprised me. She's tolerating it fine, but it seems kind of odd to be taking things away if she is going into surgery this week.

In regards to that, here's what I know. They discussed her case this morning. They are all in agreement that they want to do the operation this week. The surgeon is going to look at his schedule at make a decision. However, the intesivist doesn't think she is ready to go in the next few days. Because of her fever on Saturday night, he thinks it would be a recipe for disaster in terms of how sick she could come back from surgery. He said they would need his approval before taking her in. He ordered a lab that will give an idea as to how "ready" her body is.

The surgeon said he might have an idea by the end of the day, but they haven't talked to the intensivist yet. So, we'll continue to sit here on pins and needles waiting for an answer.

Patience is a virtue.

Sunday, May 11, 2008

Happy Mother's Day!

Hope you were all able to have a wonderful Mother's Day!

So, which one of you prayed about the fever situation? She has been sitting below normal for most of the evening. We'll take that over a high temperature! One of her sputum cultures did come back positive with some type of infection, but it's not one that doctors would normally treat. In Olivia's case, they would, but the antibiotics she is on should cover that. They actually discontinued one antibiotic and kept the other.

If you can only imagine this: I am sitting here watching Olivia with both of her legs stretched up in the sky. She is pulling on her restraints trying to get them untied. She found a way to get her IV out of her arm earlier today, which caused her to bleed all over the place. Remember, the adorable puppy her neighbor got for her? Well, basically it looks like it was shot in the rear. She also found a way to disconnect her catheter for a while a peed all over her bed. How is she doing all of this, you wonder? They decided to give her a holiday and un-block her (turn off her paralytic). I've gotten huge smiles from her and a whole lot of high-fives! Talk about an awesome Mother's Day gift!, she needs to go to sleep. She is definitely too awake for being on the vent. She's going to end up extubating herself. Now, they are just tweaking her sedation medications.

We had a great Mother's Day celebration today. My sister hosted. Zac made it over and stayed for a little while. He had prom last night and after-prom all night, so he was a little sleepy. He was able to see Olivia for a while to and get his fair share of smiles and high-fives as well. I should mention that the lost IV and the disconnected catheter happened on his watch, not mine. Anyway, as I was saying, we had great food and great company. The kids (and Zac) ended up getting me a Gel Feather cover thing for the bed. Zac got the idea when I came home for my sleepover last week. I didn't sleep in our bed. I started out there, but at least one, usually both, kids always end up with us. It's soooo uncomfortable. So, he thought this would make it more pleasant for our cozy little "family bed" that has come to be. How thoughtful.

Well, it's taken me at least an hour to type this because I keep getting up to play with Olivia and try to prevent her from causing damage to herself. I'll close for now - until tomorrow!

Saturday, May 10, 2008


Jack is getting so big. He had his first sleepover last night (at someone besides a grandparents or cousins house). Some good friends from Galesburg called Zac yesterday to see if Jack would be interested in coming to have a sleepover with his friend Riley. After stalking down the Lincoln School Kindergarten class in the middle of their field trip, he asked Jack if he would like to go. Of course, an immediate YES! So, Grandma took him to Galesburg last night and he did great. I was nervous he would get homesick and waited for a phone call, and it never came! (He must not take after me. I don't know that I ever made it an entire night without calling for mom or dad to come pick me up). He had a really good time. They got to go to Happy Joe's, play some baseball, build forts, stay up late, and do lots of playing outside.
Then to top it all off - we got to meet more friends for lunch! My best friend Nicole was in town and brought the girls to meet us at La Gondola. Nic brought me the neatest ceramic tile with the saying "Life is fragile, handle with prayer" on it. I'll have to get a picture and post it when I get my camera working (which explains the lack of pictures over the last month). Anyway, it was very therapeutic to see my friends, relax for a while, and have a little "Jack time."
Now, back at the hospital, Olivia has a fever. It's gotten as high as 102.something. She has Tylenol in her, cold washcloths under her arms, and a fan blowing on her. It is slowly coming down, but we need a few extra prayers to keep it down and keep her infection free!

The Children's Heart Project

Someday I hope I can live in, or at least near, a bigger city that has a hospital that participates in the Children's Heart Project, like Peoria. Last year when Olivia was is the hospital we learned of this project. I've always kept it in my heart and in my mind. It's always completely amazed me. You may have heard of the organization Samaritan's Purse ( It's a Christian mission organization that helps the poor, sick, and hurting in less fortunate countries. For example, you can donate money to buy a goat for a family, or donate money to buy medication for HIV/AIDS patients, the list goes on. Anyway, the Children's Heart Project brings heart kids from countries that don't have the technology and expertise to perform needed operations. Last year during one of our admissions we saw at least 3 kids of different ages come through from the Heart Project. There is a little guy next door to us right now from Kosovo who had his heart fixed. Usually the mom and one other person travels with their child and stays with a volunteer family during the surgery and after discharge until they get the okay to go home. There is usually a translator that also stays with the family to help with communication barriers. The doctors and surgeons donate their time and expertise to do the operation and follow-up care. The sponsoring family donates their time to help with accommodations, travel to and from the hospital, and to support the visiting family. Last time I checked, if you had 100 people donate a mere $22.00 you could bring a child here and potentially save, or at least, extend a child's life. The $2200.00 usually covers the cost of their round-trip flight and I believe the rest is covered by sponsoring churches, families, and doctors. Can you imagine how good that must feel? Maybe it will work out that someday we can be one of those amazing families that can sponsor a heart kid from another country. We'll try to get Olivia all taken care of before we venture down that road. Anyway, check out the website.
So, Olivia is doing well. It's just a matter of tweaking here and there to keep her stable. One of the cardiologist's popped in this morning and said he plans to bring a really strong case into cath conference on Monday regarding Olivia. He really thinks they should schedule her as soon as possible. He keeps seeing more red flags with her. She is not able to wean off of her epi drip whatsoever, which is another reason he believes she needs to be repaired ASAP.
So far, all of her cultures have come back as negative, so the one positive culture was most likely a contaminant. She's had a fever here and there, but most likely that is just her stress response. They continue to send cultures, so we need lots of prayers that she stays infection free so she is able to go to surgery with no hold-ups! Monday can't get here soon enough!

Friday, May 9, 2008

Rumor has it...

Rumor has it that they are going to talk about Olivia's case in cath conference on Monday. Over the next few days, there most likely won't be anything exciting to blog about as far as Olivia is concerned. It would be silly to try to mess with things if she is going to be going to surgery during this admission. All of her cultures are still pending. I think they would love to be able to wean off her epinephrine drip, but she's not tolerating that whatsoever. It's not a drug they like to use long term, but her blood pressures are not staying stable unless she has it and no one touches it!
I do know that her white count is coming down, her platelets are going up, and her hemoglobin is staying put. These are all really good things when considering possible infections in the body. She has also been temperature free for at least the last 24 hours. They were able to make a few vent changes as well and her oxygen saturations (as well as her kidney sats) are awesome today.
So last night, Zac brought Brooklyn this direction. On the way, they stopped at the gas station and he bought her a treat. A bag of cotton candy. What were you thinking, my dear, sweet husband? My mom brought her in the house and she was squealing with delight. She was completely out of control. I've never seen her like this before in my life. It reminded me of the time Zac unintentionally let Jack have a Mountain Dew (I even accused the neighbors of giving him beer). Anyway, it was actually nice to see Brooklyn so happy and exuberant. She's normally pretty moody. Who knew I just needed to keep a bag of cotton candy on hand?

Thursday, May 8, 2008


Olivia's had an extremely stable day. But, enough about her - this post is going to be about me today.
I had at least 3 people at the hospital ask me if I was okay today. They asked if I'd been crying (I hadn't). They asked if I'd been sleeping the last few days (somewhat). They asked if I'd been eating (yes, if chips, candy, soda, and coffee count). So, I took that as a hint that I must look really, really bad. I tried to say it must be allergies, but I actually feel pretty good otherwise. So, I left the hospital and went to take a nap. I feel so much better. I think I may even go for a walk or at least sit outside for a while. Apparently exhaustion had set in.
I'm not planning on going back in this evening because mom is there now, Zac will be there soon, and Brooklyn will be coming back to mom and dad's for the rest of the weekend. I'm excited to play with her. I don't know why it's so hard for me not to be at the hospital. I do okay when I leave at night, for the most part, but I guess I'm asleep and not thinking about Olivia (at least consciously). I'm struggling just sitting here and not sitting there typing this. But...I'll get over it. I just need to keep myself busy. Maybe I'll go shopping until Brooklyn gets here.
Anyway, I also wanted to express how much it means to me to see all the comments that people leave on the blog. I am truly amazed that there are so many people across the country praying for us or thinking of us. There are even complete strangers - people we have never even met and may never meet, that think about us often. I don't know if you are just coming out of the woodwork to follow Olivia's story now, or these last few months have made you feel really, really bad for us, or we are just sounding (and apparently looking) really, really pathetic lately! Whatever the case may be, we truly appreciate your thoughts and prayers. Thank you so much.
Along those same lines, yesterday, Olivia's neighbor bought her the softest, most adorable little puppy stuffed animal I've ever seen. Seeing Olivia the way she was, and the worry I must have had on my face, brought back memories for her mom from many years ago. So, her mom went down to the gift shop and bought the dog for Olivia. She also gave me a little note with her email address in case I ever wanted to talk. She had been through similar situations in the last 8 years. So thank you SO much to adorable Jaci and her mom! When Olivia wakes up, I'll have to post a picture of her with her new puppy! You are a amazing people! I hope you are on your way home soon!
The moral of the story: People amaze me. I could probably spend at least an entire day writing posts about what people have done for us over the last 2 years. We are truly humbled and blessed by the people we know (and don't know).
Thank you.

A little more info

Olivia had a very stable night. Around 5:00 am they had to change out one of her medications and her pressures dropped into the 40's again. So, they switched that medication to an epi drip to help keep her pressures up. Otherwise, no big changes throughout the night. They aren't really changing much - just keeping her comfy for a couple of days. Her chest xray looked much better this morning compared to yesterday.
One of her blood cultures did come back positive, so they will draw more cultures today to see if it just a contaminent or if there is an infection in her blood stream. The results take 24-48 hours, so we won't know much until the weekend in regards to the new cultures they are going to send. I think they have found her happy medium and will just let her rest for a while and not mess too much.

Wednesday, May 7, 2008

So here's where we are...

Deja vu.

Things are looking all too familiar for Olivia, again. Obviously she is on the vent again. She is on a whole lot of medications. She is back on a paralytic, 5 sedation/agitation medications, 2 antibiotics, 1 heart medication, 1 blood pressure medication, and nutrition through her IV, along with all of her home medications. They have also put on a somanetics patch on her back to monitor her kidney function and a BIS patch on her forehead to monitor how "awake" she is underneath all the sedation and paralytic. Her blood pressure is still teetering here and there, but her heart rate is slowly coming down and her oxygen saturations are so-so.
Anyway, she has a room full of machines - again.

They did the echo of her heart this afternoon. It did show a significant change over the last 2 months. Her sub-aortic stenosis has gradually gotten worse and her mitral valve leak has gotten quite a bit worse. The debate, as usual, is when to do the surgery, whether to do both defects at the same time, and whether to replace or repair the mitral valve. It seems to me they will wait until her cultures come back. If anything comes back showing infection, I would assume they'll hold off until she is over this hump. If she doesn't show any signs of infection, this is probably all signs of congestive heart failure and I think they would be more likely to do the surgery sooner. Again - that's all in my opinion, so we'll have to see.

We'll pray for a calm, peaceful, and consistent night and see what tomorrow brings.

Back in the saddle again

Olivia is back on the ventilator. Apparently she was really struggling with her breathing last night, but was able to settle down a little bit around midnight. Then, around 3:00 this morning, they became really concerned with how hard she was working, her numbers, and her color. Once the doctors came in this morning, they decided to go ahead and intubate. She is definitely much more comfortable now. They also put her back on the nitric oxide to help with the pulmonary hypertension and started a couple of antibiotics. Her chest x-ray looked worse this morning and her white count was up as well. This afternoon they are just tinkering with some medications to get her blood pressure stabalized. They also went ahead and put in central line and an arterial line so she can get all the medication she needs, they can get an accurate blood pressure, and they can also monitor her blood levels more closely.
It was a really rough night for Olivia, and for Grandma, who was here having to deal with all of this. I was able to go to Jack's game last night. He did great! Brooklyn and I made cupcakes in ice cream cones for her to take to preschool tomorrow for treats. These were the two reasons I went home. The cupcakes had about 2 minutes left in the oven when I got the call that they were going to intubate. So, Zac came home to get Brooklyn, I packed up and headed back over to Peoria. The timing was perfect as far as me getting everything done that I felt I needed to. I wish I could have been here sooner or found a way to tele-port (is that a word?) myself to Peoria, but Olivia is in the best hands here and I knew everything was being done in her best interest. I made it just in time to see the blood pressures in the 40's (yikes!).
Anyway, like I said, she is so comfortable right now. I'm sure I'm forgetting a lot of details that I'll think of later.
Oh - I did remember to take the cupcakes out before I left the house - in case you were wondering about that=)

Tuesday, May 6, 2008

Bloggin' from home

Just thought I give a quick update. I'm back in Macomb for a sleepover - it was Jack's first night for baseball. Who could miss the first big game?
Anyway, Olivia had a so-so day. She was definitely breathing faster and working a little bit harder. Her hemoglobin dropped to 7.4, which could have caused the faster respiratory and heart rate. They gave her a blood transfusion this afternoon and it seems to have helped a little bit. It's just a vicious cycle with her. The cardiologist thinks that it could be her leaky mitral valve that is causing her hemoglobin to drop. Her "collapsed" lungs could be causing her mitral valve to leak significantly more. This could also cause the high fever she got on Sunday. Her leaky heart could also be causing the "collapse" in her lungs. Basically she needs her heart fixed. He was going to try to get everyone together from hematolgy, cardiac surgery, PICU, and cardiology and make a decision as to when to do this. I feel like they will do the surgery during this stay. Otherwise we will just come home and have this all happen again. It's not ideal timing, but if it's going to get Olivia back to "normal" we need to get it done.
As of this evening, my mom said she's doing just fine - nice and pink from all that blood! Brooklyn and I are going to hang out in the morning and then I'm going to head back to the hospital in the afternoon. I haven't been able to get the internet working at the hospital this time, so that's why it's been early morning or late night postings. Hopefully I can get it figured out soon!!

Monday, May 5, 2008

Quick Monday evening update

Olivia had a good day. Nothing exciting. She was still hanging out at 4 liters 55% on the high flow oxygen for most of the day. She went up and down a little here and there. She was able to eat, and enjoyed that, of course. Anyway, there is really not much else to say. She's really sleepy, but I think that's just how she copes with being in the hospital. It's just as easy to sleep through the entire stay. Wish I could do the same. Anyway, hopefully there will be some big breakthrough and lots of exciting news tomorrow. I don't even know if we were given a diagnosis for this admission or if it's just chalked up to Olivia missing everyone in PICU and wanting to make yet another grand entrance. That girl!

This really isn't funny anymore.

This is getting really old.
Olivia is back in the hospital. She has been having really bad bloody noses since we got home last week due to the increase in oxygen. It's just drying out her nasal passages. Yesterday she woke up a little bit congested. I'm not able to suction her nose because it sparks another nose bleed. Anyway, she started working harder to breathe as the day went on, but her oxygen saturations were good, no temp, still fairly happy - just too stuffy to breathe. During the early afternoon, she decided she didn't want to eat. We went mushroom hunting at Grandma and Grandpa's (Olivia stayed in with Grandma). By the time we got home around 7:00, she had a fever of 103.9, started vomiting, and just looked plain nasty.
Needless to say, I took her on over to the ER in Macomb and she took her 5th flight (3rd in the last month and a half) on over to the PICU in Peoria.
So here we are. She actually had a really good night. They immediately put her on the high flow oxygen. Her heart rate went down, her sats went up, her respiratory rate went down, and she looks wonderful. They have already been able to wean her oxygen down to 4 liters at 60%, so hopefully she will be able to try to eat today. Her lungs looked pretty nasty on the x-ray, so she is getting breathing treatments and other respiratory therapy. Otherwise, she really does look like she's feeling okay. We'll see what the day brings.