We've actually had another 2 good days in a row. They didn't do much of anything today. This morning her heart rate was low, so they decreased some of her sedation and paralytic. This afternoon her blood pressure was high, so the increased her sedation and paralytic. Basically, we are right back where we started this morning. Oh well. We have learned not to be frustrated on these days. We know Olivia likes to take things slow - her way or the highway!
You guys don't mess around. All those Sunday prayers have worked today. Olivia's had a great day. There weren't any changes for the most part. They discontinued her feeds last night, so they started her on TPN which is a nutritional supplement that goes directly through the IV. They also gave her a little volume (albumin) when she started slacking off on her peeing. They aren't messing around with her. One little beep and they are on it! We'll like when she isn't at that point, but for now it's just fine. The Florida group is doing great - trying to pack lots in in just a few days. Tomorrow is the last day at Disney and they will head to Ocala on Tuesday to get into wedding mode.
Olivia Grace Chatterton! (This is me yelling at Olivia telling her to knock it off!)
Sorry, but the following is another lazy cut and paste from CaringBridge, but it was a late, late night and I slept in this morning. I want to get in to see her, so you'll just have to bear with me. My deepest apologies.
Well, if there is a secondary infection coming on, it's a doozy. Last night at shift change (of course) Olivia made another statement for herself. She was having low blood pressures for a while and then she all of a sudden went haywire. Her heart rate was in the 60's, blood pressure was in the 40's, and her oxygen saturations were in the 50's and 60's. Very, very scary. And this continued for a good hour and a half at least. Once about 5 meds. were added and 1 was taken away, she was back to a good place. They have re-paralyzed her and stopped her feeds. Her belly is very large and she seems to very "backed up." I guess the bottom line was one of two things:
1. A secondary infection is sending her into a tailspin.
2. She became dehydrated and things started shutting down. We are leaning more towards this, because of how sudden things happened. She pretty much stopped peeing, her face got puffy, and she perked up after a whole lot of blood and blood products were given last night.
However, a sign of infection is determined by these "bands" on a person's white blood cell. Normal range is 1-10% and Olivia's "bands" are sitting at 31%. They have put her on 3 antibiotics, so hopefully this gets whatever might be brewing.
Don't you love how medically knowledgable you become once you've been updated on Olivia! We should all be about ready for a honorary medical degree. Have a good day.
Olivia is definitely getting her money's worth this time around. She's keeping everyone on their toes! She had a few more of her little episodes throughout the night, and is on a few more medications. When she is awake, she gets very angry. You can just tell she is a bit more aware of that stinkin' tube in her mouth. She's also spiked a couple of fevers, so she is on 2 new antibiotics, again. They anticipate another infection is coming on.
The rest of the fam landed safely in Orlando last night and have already been to the Magic Kingdom today. Brooklyn was just tall enough to ride Splash Mountain and since it is cooler, there was no wait in line! She was so excited! It sounds like everyone is doing great. They sound exhausted already. Apparently the kids were up until 2:00 am and up by 7:00 am this morning. It may be an early night for them tonight!
Okay - so I totally jinxed things this morning. Olivia had an awful morning. I think she is anticipating everybody going to Floriday without her ;) She is back to stable now, but, boy, was she looking nasty this morning. The vent is set at a rate of 27 breaths per minute and she was breathing about 60. She was coughing like crazy, but they weren't able to suction anything out. It was all just sitting in her lungs. It was very odd, because she looked so bad, but her x-ray looked 10 times better than yesterday. Anyway, bottom line is, there was a plug somewhere that wasn't allowing oxygen to move throughout her lungs. The intensivist put this nasty smelling solution called Mucomyst into her vent tube and was able to break it loose. She did have to go back up to 100% oxygen from her 55%, but we'll wean that back down. They also gave her another enema to try and get her to poop again - her little tummy is enormous right now. Now that it is all said and done, she is happy as a clam! Well, that might be a bit of an exaggeration, but she is sleeping and breathing peacefully!
I forgot about the fact that they actually found the virus that caused all of this. It is a strain of the flu - human parainfluenza virus type 3. Everyone was really excited to get a positive test back since it gives a reason and explanation to all of this. It definitely hit her hard, that's for sure! She was really awake in the evening yesterday so they increased her sedation. Her oxygen saturations were also up quite a bit during the afternoon, so something broke loose in there, which is great. That's the biggest thing right now is getting those lungs cleared out. It's hard to not see any big medical changes, but it's just going to take lots of time. We know it's her way or the highway! The fact that she has been so stable with no setbacks for 2-3 days is huge! We'll take it.
Yeah, Olivia! The goal on Tuesday was to get Olivia to poop. They gave her some meds for constipation and a glycerin chip. I said "good luck with that," as I am aware that Olivia doesn't always respond to that. So, yesterday they went full force and gave her a dose of triple concentrated Milk of Magnesia. During the night last night, she pooped all the way up to her neck! (Literally.)
Other than that monumental occasion, she is still stable. No big changes. The hematologist came up yesterday and had planned to do the bone marrow biopsy today at 1:00, but the intensivist said Olivia wasn't ready respiratory wise. So, we'll wait until she is more stable that way and do it then. It is just a 10-15 minute bedside procedure that will leave her very sore. That's why they want to do it while she is still on the vent and sedated. She is trying to lift her whole head and opening her eyes a lot more. I always love seeing her open her eyes, but I always hope she isn't aware of anything. Once of the nurses even claims she got a smile this morning. Hopefully when she does wake up, she forgets how rude she always is to all medical professonals. Maybe she'll actually be cordial to them. Who knows?
Anyway, I was able to come home last night to go to Jack's Fine Arts Festival at school. It was great! I took both kids to school, got them packed for Florida, and will head back to the hospital after I pick up Brooklyn. I came home last night to a clean house and a full dinner on the table thanks to my mother-in-law! My mom stayed with Olivia and keeps me posted on all changes. I have the best, most supportive family in the entire world, which makes this whole situation a little bit easier. The true test will be tomorrow when I send off the rest of the family to Florida.
I am going to have to post a picture of Olivia's medicine. I think we are down to 9 or 10 pumps. That way you can all enjoy the progress we make along the way with us! Have a good day and I'll keep you posted on any exciting events that may take place!
Olivia is doing really well today. Again they made some changes on the ventilator and added a couple of medications. We also lost a couple of medications. She was working hard breathing this morning, but it turns out she has another fever. Gee, what's new? Anyway, it was causing her heart rate to go up, and all that good stuff. Now that her fever is under control, she's doing great. Her numbers are all looking good.
I'd say the best news is that her platelets are up to 32 today from 18 yesterday and they did NOT give her the platelets last night. They decided against it, so this is all her bone marrow doing the work. I haven't talked to the hematologist yet today, so I'm anxious to hear his thoughts.
They also turned her over to her belly. She looks much more comfy, but she keeps trying to lift her head and turn it the other direction! What a feisty little girl. She is getting stronger and starting to feel better. We'll see what the rest of the day brings! Keep praying! God is Good!
I was going to do another "cut and paste" from CaringBridge, but that wouldn't be fair two days in a row! Olivia had a good day - no true "setbacks" when it comes down to it. She did gain 2 new medications, increased some, decreased none, lost one, added a machine or two, had an echocardiogram, added a PICC line (a more long-term IV access), gave her some platelets, adjusted the ventilator, turned off her paralytic - should I go on...
It was a long, big day.
Even with all the changes, it seems like we may be finding her "happy medium." She is tolerating being off the paralytic much better this time. It is so great to see her move her feet, hands, and toes again. We still haven't seen her open her little eyes yet, but that will come soon enough, I'm sure. She still needs some time to rest. Her chest x-ray looked much better today. Her lungs were a little over-inflated, but some of the changes should address that. By the end of the day, her heart rate, blood pressure, and oxygen saturations were all status quo. The docs were happy to finally see some stability.
I talked with Dr. Al from St. Jude for a long time. Of all the info he had to share, I got this from it: he will do the bone marrow biopsy during this hospital stay once she is stable enough to do so. He will draw bone marrow from 2 locations and have some results that day and others in 3-5 days from the procedure. He is still confident there is no leukemia. All the other stuff went right over my head.
Oh, she is also getting feeds in her belly. She is up to 25 ml of milk an hour (that's equal to 5 teaspoons an hour).
I'm sure I'm forgetting lots since so much seemed to happen today. One of these days when things slow down, I'll let you know what those things were! Please pray for a peaceful night. We don't want to have to restart the paralytic, so she needs to stay calm. I'll update more tomorrow afternoon, unless something huge happens before that!
For those of you who check CaringBridge and this blog, I am doing a quick "copy and paste." I usually try to mix things up a little bit, but it's been too long of a day today. I'll try to do better tomorrow! Have a good night.
A quick update - Olivia had a pretty bad day today BUT it's ended well. It's all a guessing game trying to figure the right mix for her. We lost 1 medication and gained 3 or 4. We increased 2 settings on the ventilator. Her labs were up and down all day. In the end, Olivia's cardiac surgeon stopped by to check things out. Right now we are a medical case, so he hasn't "officially" assessed her. After scratching his head for a while he did a little research on her past surgeries. It turns out we had forgotten that he put a tiny hole in her heart as a "pop-off valve" to relieve pressure when her heart is on overload. It's very complicated, but it has been causing all of the random things we haven't been able to figure out. She is still very, very sick, but this is a huge tidbit of information to at least answer some questions regarding her oxygen saturations. Keep up the good work on those prayers!!!
First of all, I guess I wasn't allowing you all to post! How rude. You should be able to now. (Thanks Judy!)
Okay, now on to more important things! Olivia had a stable night. The only change over the night was that they increased her vent settings a bit. Her body isn't oxygenating as well as they would like, so this will help. The epinephrine is officially off and she tolerated that well. They increased her milrinone to improve heart function and her heart rate is already improving. No one seems very concerned with the low heart rate as long as her blood pressure stays up. As Nurse Kris kept saying yesterday - with Olivia "we can't have it all!"
This is Olivia's ventilator that is doing all the breathing for her. The machine in the back is her Nitric Oxide. This is going through her vent to help stint open her lungs. She has had this before. It helps with her pulmonary hypertension.
She continues to be sedated and paralyzed. She is just too feisty to do anything otherwise at this point. Her temperature has also stayed down for about 24 hours now.
This is a view of all of her medications. There are also 2 more "pumps" on her bed for blood transfusions and antibiotics. This is the same amount, if not more, than what we've had after heart surgeries.
Olivia is so peaceful and comfortable right now. She looks so much better than on Friday and is getting some much needed rest.
I haven't had time to mention it before, but there is a family around the corner from our church. The mom and 1-year old son were is a car accident on last Tuesday (when the weather was nasty). The little boy is/was in critical condition. He was able to get off the ventilator yesterday and they were going to be removing a catheter from his head that was relieving pressure from the brain. He is stable now and tolerating being off the vent. He needs some prayers right now, too. I know the family would really appreciate it. We'd rather not be where we are now, but it is nice to see familiar faces and know that there are people to connect with.
Thanks so much!
Olivia had a great night. She is holding her own and has made a little progress. They have tried to work with her ventilator settings with little success, but we'll get there. They turned off her paralytic this morning, but she tried to roll out of bed! Needless to say, it's been turned back on. They have weaned some of her sedation, though. She has also been able to keep her fever down without the use of Tylenol or Motrin! You go, Olivia! Slowly but surely, we're making baby steps. So far, all of the tests that have come back are negative for infection. This is good, but would be nice to find a source to all of this. I'm taking pictures of all of her medicines and ventilator stuff so you have an idea as to what all she is hooked up to. I won't post any pictures of her yet. It's a little too PG-13 to do that! We'll wait until we can see her smiles!
On a lighter note -
I was very concerned about Brooklyn yesterday. I didn't know what she saw, heard, etc... I was off with 911 and Zac got home (beat the ambulance - nice.) Anyway, he wisked her off to the neighbor's (who just happened to be pulling in her driveway at the time) in her p.j.'s and no socks or shoes. The ambulance and firetruck were screaming down the street, sirens, lights, and all. She didn't hear or see a thing. Do you think we should be worried about our future? She is something else. If you don't know Brooklyn, this is a classic example of her sweet, little, ditzy personality, which we love to death!
The big kids are here now, so we are spending time with them. We love to watch your prayers be answered, so keep up the good work. Also, we love to read all the comments, so if you want to leave one, just click on the "anonymous" button and it will let you post that way. Just be sure to sign your name at the end so we know who you are! Thanks! We'll keep you posted!
