"The Meeting"

We are feeling much better about the plan of action after our meeting today. Each one of Olivia's specialties was represented, so it was nice to get everyone on the same page.
The main goal right now is to determine why Olivia is so sick. They are going to run a couple more viral tests to rule a few things out. I think, for the most part, everyone is in agreement that the main problem is Olivia's pulmonary hypertension. They are going to try to start her on another medication that may help. We are giving it one week, and hoping that she is able to start weaning on the vent. If not, they will probably do a cardiac catheterization to get a "true" reading of the pressures and function of her heart. Another possibility is putting a hole in her heart to help relieve some of the pressure. She originally had one put in during a previous surgery, but it may have closed on its own.
As far as her pre-leukemia is concerned: Would it help to start chemo at this point? No. It would just cause her immune system to be more compromised. Is it detrimental to not start chemo at this point? No. Her platelets and hemoglobin are able to be managed with transfusions.
They are going to try to run some more tests on her blood to see if her spleen is by any chance contributing to her breakdown of platelets. Her spleen is very large and could be "eating" up all of the platelets that she is getting.
So, as always, we feel that everyone has Olivia's best interest in mind, and hopefully she responds to these new ideas. She is in amazing hands here.

Perplexed.

The doctors just rounded this morning and said they are still trying to figure out why Olivia is tolerating coming down on the vent settings. They are going to consult the cardiologist and possibly do another echo to check her heart function again. This particular doctor seems to think she is heart failure and that is why she isn't showing many signs of improvement.
She also has bacteria in her airway...the same thing that was in her urine last week. This may mean we are back in isolation, but no one has mentioned it yet, so I'm most certainly not going to bring it up!
Her fluid balance is such a touchy subject. She's either too wet or too dry, never "just right." Today, she is on the dry side. She is still running fevers - right around 101 consistently. She needs platelets, once again. She dropped down to 19,000 from 35,000 yesterday. We still have our family/doctor meeting this afternoon, and I've been working on our list of questions all day. I can say that I'm going in with the attitude that we may not get any answers, but at least we can hear everyone's theories and pick the one we like :o)

Happy Doctor's Day!

Today is Doctor's Day. A day to honor the doctor's in your life. Lord knows Olivia has a few! So, this post is dedicated to you, Doctors. We appreciate you more than words can express. Some of you have become more like family, than a "healthcare professional," after all, we spend more time with you than we do the rest of our family. You take great ownership in Olivia, rightfully so. Even though she's probably caused you more gray hair and sleepless nights, she's been known to put a smile on your face just the same! Happy Doctor's Day!

So, a big thank you to: (in no particular order;o)
Dr. Lockard
Dr. Torres
Dr. Deshpande
Dr. Fortuna
Dr. Shah
Dr. Pearl
Dr. Al-Rahawan
Dr. Smith
Dr. Ross
Dr. Hasselman
Dr. Bash
Dr. Michaels
Dr. Uretzky

And anyone else I'm forgetting! Thank you, thank you, thank you!

Silly old fevers.

Olivia is still having fevers from an unknown source. They range anywhere from normal (very rare) to 103+. They continue to culture her when she spikes, but nothing comes of it. Today the doctor decided to try and switch one of her medications to see if that helps. There has been some research that Lasix in Down syndrome children can be linked to fevers. Olivia's been on Lasix since birth, so I don't know that it's the case here, but it doesn't hurt to try.
Olivia's cardiologist decided it would be a good idea to set up a meeting with all of Olivia's doctors so we can formulate some sort of plan. So, that is set up for tomorrow at 2:00. It will be nice to meet with everyone and see what each of their thoughts are regarding the best thing for Olivia.
Otherwise, things are all well here. No big changes.

7 times a charm...

I think Olivia set a record for herself today. Her peripheral IV went bad, and they needed another one to give blood through - it took 7 sticks before they finally got a good one! And we are talking the best of the best IV stickers here! Poor baby girl. Anyway, she is getting some blood today and some platelets (dropped to 17,000). They are going to try to very, very slowly wean down a bit on her vent today - nothing significant. When I came in this morning, I even got a little wave from her...so sweet! Now, she down for the count. Getting that IV in her took away all her energy, so I imagine she'll have a restful day!

Chugging away...

I am still totally amazed at how well Olivia handled everything yesterday. Hopefully she is starting to feel better. She's had a big morning already today. She got a new tube holder put on for her vent tube, got a couple of her dressings changed for her lines, and got her bedding changed...doesn't sound like much, but in her little world right now, it's huge!
I have noticed a bit more bleeding from her broviac site and her art line site, but it's not much at all. I'm just hoping it's not because of the switch in blood thinners, and is happening "just because." They'll probably keep a close eye on it. Otherwise, there most likely won't be any big plans for the weekend...just give her time to settle down from the last couple of weeks!

More details.

Okay, so the broviac went great. Placement is good, numbers are good, etc... They did decide that her heart isn't functioning well, and started her on some milrinone. Hopefully, that will turn things around. We are hoping that the heart problem is related to either whatever infection she's been battling, or from the "aggressive weaning" that took place earlier in the week. It may have just pushed her too hard. Also, they have been trying to regulate her clotting times with heparin. Her clotting times haven't been therapeutic, but when they increase her heparin dose, it seems as though her platelets drop. Coincidence? Maybe. So, they drew a lab to test for "Heparin Induced Thrombocytopenia." She's had this drawn before and it's come back inconclusive. So, they are sending it out this time, for a definite answer, and have switched out that medication to Angiomax. She's not peeing like she should, so they went back up on her diuretics. So, a day with lots of changes...but she handled them all with ease!!!

All good.

This is the first time in Olivia's career that she has cooperated for Dr. Fortuna! Woohoo! She's on her way back up to her room, so I'll post more after I get to see her....

Big day.

Olivia's CT scan didn't show much in terms of infection. Her liver and spleen are huge - could be leukemia or heart related - lymph nodes are huge, and the right part of her heart is much bigger than the left. She could be in heart failure as opposed to this being lung-related. She had an echo done this morning, so we'll see what that shows...it may just mean putting her on another heart med to get her heart in better working order.
She is going for her broviac today at 2:00. Hopefully, it goes more smoothly this time around.
Her platelets dropped from 24,000 yesterday to 19,000 today - and that's after receiving platelets??? Needless to say, she's getting more platelets today.
Also, her urine culture came back negative, so we are out of isolation! Yippee!
A different hematologist is going to be visiting her today to discuss switching some of her medications around. They may change her heparin drip over to Angiomax. She's been on this before, but I don't remember the significance of the difference between the two. Her temp has stayed lower than what it has been, so at least things are staying status quo.

All done.

She tolerated the trip to CT just fine. We most likely won't know anything until tomorrow, but I'll be sure to post as soon as I get word! Thanks for the extra prayers!

CT Scan

So, it's been decided that Livs needs a CT scan...from her head to her toes! Hopefully, this will find some source of infection that isn't coming back from any of the cultures. She's not breaking her fever at all today, she has a very, very hard tummy - can't tell if it's her spleen, if she just needs to poop, or what it may be - and she just isn't looking good. So, we are praying that it shows something...anything...as long as it's minor. It's just getting so frustrating, not being able to find a cause to all these fevers. She's been on some of the big guns, as far as antibiotics, and they haven't knocked out the culprit. Anyway, the scan is scheduled for 4:20. Hopefully, they see something...otherwise, official results probably won't be in until tomorrow. Keep you posted....

Misbehavin'

I tell ya...I leave the girl for less than 24 hours and she gets herself in a tizzy. She was very gaggy before I left yesterday and apparently it only got worse. She was getting herself so worked up that she was vomiting a bit. So, they put a NG tube down through her nose. Well, that ticked her off even more. Then, it seems as though all the changes from the week caught up with her. This morning she spiked a pretty good temp, and has had trouble getting it down.
The doctors seem to be having different opinions about putting the broviac in now. She just looks like she feels yucky. I am definitely glad she didn't get taken off the vent yesterday, because it seems as though it wouldn't have lasted long.
What else...they took her catheter out yesterday, and she hasn't been peeing very well...few and far between. They haven't rounded yet today, so we'll see what the doctors think of all this.
The sleepover was good. Crowded, but good. We took Jack to school this morning and Brooklyn came back to Dunlap with me. She's having a really hard time with things this time around. She may be playing me like a fool, but she seems to do it for everyone else, too, which makes me think it's legitimate. We got both kids registered for tee ball/little league and Brooklyn registered for Kindergarten, so it was a productive evening. Praying for a better day for Miss Olivia! Keep you posted...