Slowly, but surely.

Olivia's still doing awesome. They have started working on her vent settings which means there actually may be an end in sight for this ventilator! They are just going down a teeny weeny bit each day, so it will still be a while, but she is tolerating it just fine. All of her numbers have been great and she has tolerated an increase in her feeds, decrease in her diuretics, decrease in her blood thinner, decreased in her last sedation, etc...
She is going to have an ultrasound of her liver today because her liver enzymes have gone up. They don't expect anything to come of it, but are just making sure. Other than that, not much else is new with Olivia.

Losing lines

Olivia is actually starting to get rid of some things. She pulled out her catheter yesterday and has been able to keep it out since she is peeing so well. They also decided to pull her central line from her right leg as opposed to replacing it. Since it showed signs of infection and she had another line in place, they thought it would be okay to get rid of it.
They have been trying new things with securing her vent tube to try to prevent the skin breakdown. We'll see how the latest works today. Otherwise, she is getting yet another round of platelets to keep her numbers up and is still working on getting her blood thinning medication to a happy place for her. All is well.

Woohoo!

Go Livvy! She is doing awesome. It's amazing to see the progress she has made in just the small amount of time that I was away. They were able to get her nitric oxide completely off today, another sedative is off, and her vent tube holder is changed out. She was given some platelets and is going to be getting the central line in her right leg changed out today sometime too.
It's so fun to see her playing with everything. The nurse gave her a large medicine syringe to play with and she was switching between her two hands. I know it seems so minor, but that was the best part of the day. I remember so well when her therapists at home were so excited when she could pass things back and forth. It was a huge developmental milestone and it's nice to know she hasn't lost too much as far as that goes. I think it's going to be the muscle tone that sets her back. Her legs should be great since she can kick those around, but having her arms restrained is going to set her back a little. Oh, and they also re-started feeds today.
Anyway, everyone is so pleased with how well she is doing. The big battle they are addressing today is her skin breakdown.
WARNING: This next part is pretty gross. There is literally a hole in the side of her face from where the vent tube holder was and the other side has a huge bruise that looks like it could turn into a sore. Also, everytime they have to change a dressing, it pulls a layer of skin off and she starts bleeding. So, they have called in a wound specialist that should be in this afternoon sometime.

All in all, Olivia is doing awesome. Jack and Brooklyn are doing great, too. Brooklyn has really been a happier child since she turned 4. Must be those ground rules I laid down for her. I loved seeing Jack's game last night. They have really improved since the first game of the season. He was able to hit twice and make it the whole way around without getting out and he got to play 2nd base. The three of us went out to eat for breakfast and just hung out around the house for the entire morning.

Crazy good.

Olivia is doing amazingly well today. They did an echo this morning to check out her heart function and the cardiologist was very, very pleased with how well everything is working. Her artificial valve is doing a great job and her tricuspid valve leak has slowed down a bit. They were able to keep off one of her sedation meds that they stopped yesterday and are going to try to discontinue the other today. She is still on intermittent IV sedation, but this would put her down to having only one sedation drip! She's never been able to do that while she has been on the vent, so this is huge! They are also trying to wean down her nitric oxide as tolerated (so maybe off if she decides to tolerate it!) She is going to get some more platelets this afternoon to pump her up a bit. They increased one of her antibiotics yesterday because her central line did come back positive for infection, hence the 104 fever the other day.
So, all is well here. If we can find our way, I'm taking the kids back to Macomb tonight. Jack has a baseball game and Zac is at a conference in Bloomington. So, he is staying at my parents house and the kids and I will stay in Macomb. It will be nice to be home for a night. I have absolutely no idea when I was home last. I think it was mid- to late May for Brooklyn's last day of preschool, but I'm not sure. Anyway, it should be nice. So, if you don't hear any updates until tomorrow afternoon, that's why! Have a great day!

Wonderful Weekend

Olivia has had a great weekend. She tolerated her back for 8 hours yesterday and made it over 10 hours today. She was able to get rid of one of her sedation medications, so we're down one medicine pump. She was having some significant internal bleeding from somewhere (possibly her feeding tube was causing lots of irritation) so they removed the feeding tube and stopped her feeds. They also decreased her blood thinner to try and get her blood to "thicken up" a bit. That seems to be helping so far.
We did get some preliminary results back from her bone marrow biopsy. Apparently her last biopsy showed 10% blasts in her cells (I thought it was 2-3%, but maybe that was something else) and now she is showing 5% blasts. This does not mean her leukemia is "getting better" or anything like that. I could just be the difference in the sample, however, it is not progressing at this time. We will continue with the same plan as before and probably repeat another biopsy in 2-3 weeks. If she is healthier at that time, they will most likely go ahead and start an aggressive curative treatment here in Peoria.
We had an enjoyable Father's Day weekend. Zac got lots of fun things from the kids, including a new baseball, a "#1 DAD" key chain, a Spiderman t-shirt, a red pepper plant, and a pair of Cardinals boxers that are at least 3 sizes too big. He was super excited. Happy Father's Day!

CT results

This is going to be really difficult to explain without an animated picture, but I'll give it my best shot. The CT results are back. Turns out that because her heart is enlarged and her lungs are "heavy" due to lots of junk, scar tissue, lung disease, etc..., it's causing the left branch of her windpipe to get squished. (These are obviously my terms, not even close to medical terms and may not even be right). This happens when she is on her back and on her tummy, but when she is on her tummy, she is probably more comfy and doesn't send her body into stress mode like she does when she is on her back. So this is why they think she doesn't oxygenate as well on her back. There is no fix to this, so it sounds as though she is just going to take a long time to get off the ventilator. We just have to wait until her lungs get stronger for her to be able to tolerate weaning down on the vent at all. Sounds like it's going to be a long summer vacation in Peoria for us...

Oops...

I forgot to post about the CT scan yesterday. Time flies when you're having fun, I guess. Anyway, they took her down about 4:00. It took a little over an hour and they were able to get her front side and back side (twice actually). She handled it like a pro. The radiologist is going to read it this morning and call up here and let the docs know of any significant info.
Otherwise, she had an okay night. She was pretty wiggly and wouldn't settle down. They gave her some blood and some albumin because her pressures were low. She spiked a temp this morning of 104.something. So, they drew cultures, gave her a cool washcloth rub-down, and turned on the fan. She was able to settle down right away and seems to be doing great now. We'll just wait and see what the CT showed and see what the rest of the day has to bring!

One down, one to go

The bone marrow biopsy is done. She handled it great. We should get some results by the first of next week to see if numbers have changed. Of course, they scheduled the biopsy for noon and about 11:45, the people from CT called and asked if she could be down there by noon. Figures. Anyway, they know Olivia's ready whenever they are, so when they call, she'll go on down for that!

The big day

Sounds like the CT scan won't be until later this afternoon. I'm sure you were all sitting on pins and needles waiting to see how it went, so just a little more of a delay. So, I don't know if they will get the bone marrow biopsy done today or not. We'll just have to see how the day unfolds.
On a side note, they put her on her back this morning to do some dressing changes, and she is actually tolerating it really, really well. She's been on her back now for almost 4 hours and her numbers are holding their own.
And guess what else...she's been smiling again! This morning, she got a large amount of medication through her feeding tube that caused her to vomit because of the irritation from going down. I was right up there talking to her and telling her what a great job she was doing (not with the vomiting, just in general) and she gave me the biggest smile you could ever imagine. We have such an amazing little girl!

Bone Marrow

Because of Olivia's frequent transfusions and low blood counts, they are going to do another bone marrow biopsy tomorrow. It sounds like this: If her leukemia cells have progressed, they will probably go ahead with a chemo treatment immediately. If not, regardless of her leukemia cell counts, they will probably start chemo as soon as she is healthy enough. It sounds like they will do the start here in Peoria during this admission. Anyway, we should know by the beginning of next week what exactly the plans are. Otherwise, a big day tomorrow. CT Scan in the morning and a bone marrow biopsy in the afternoon! Yippee.

CT Scan

Olivia's had a quite the morning. She had another blood transfusion overnight and is getting platelets right now. Because of her blood problems lately, Dr. Al from St. Jude's is coming up this afternoon to check her out again. Her 3 central lines have been bleeding quite a bit, so she got all those dressings changed and some new stiches put in. They ended up giving her an enema yesterday afternoon, so she's been poopin' like crazy. They decreased sedation again yesterday, so she has been wake a little more. Since she still isn't tolerating her back, they ordered a CT Scan for tomorrow. They'll do a scan with her on her back and on her front, so hopefully that shows something. Obviously, we don't want anything to be wrong, but it would be nice to know why she dislikes her back so much. She isn't going to be able to go to school on her belly after all, right? Otherwise, all seems to be going well.

Another good one

Livvy is having yet another good day. This is unheard of - this many good days in a row. I don't quite know how to react. Anyway, she is doing really well. They just turned her back over to her back and set the bed more upright to help get the pressure off of her lungs. Hopefully this will allow her to tolerate her back better. She looks so big sitting up like this. It's really good to see. They are also going to wean down on her 2 of her sedation drips again and increase her methadone and ativan with the hope of getting her off of some of the sedation drips in the next couple of days. I think this is pretty gutsy of them, but she seems to be handling it just great. So, all is well and things are still heading in the right direction!