Tuesday, July 24, 2012

Drama at the PICU

Hey all,
So, we went back home last Wednesday (the 18th) with her cough assist and vest and all that, and we had to bring her back in on Saturday morning :(
She had been doing ok, but on Saturday morning we noticed that her O2 saturation was staying low, at around 87-89, and even with suctioning her, she wasn't coming back up to 100, and she was sleeping, so it wasn't like she was holding her breath or anything. We ended up having to bag her manually to bring her oxygen levels back up and also pump her oxygen up to 15 liters, so we decided to call 911, since she wasn't maintaining her oxygen high enough. The fire department got there in no time, thank goodness, they are so awesome. But we had to bag her again in the ambulance as well, because she was de-satting again. Unfortunately, it was early in the morning and neither of us had eaten breakfast, so I ended up throwing up in the ambulance (the movement of it didn't help my stomach, in addition to the nerves and hunger).
Once we got to the ER, it was a mad house, there were so many people in her room, and it was so loud, noone could communicate properly. I was asked by 4 different people what her vent settings were. Then, after they moved her from the gurney, they were supposed to bag her until her vent was set up and they didn't notice that the bag was not connected to her trach, so she de-satted again to around 20, this time, but were able to bring her back up again. I was so weak from the vomiting that they had me lie down in a bed as well. Luckily, they brought her up to the PICU relatively quickly, we were only in the ER for about 3-4 hours.
Once she was in in the PICU, they did all the blood work and cultures to see if it could be an infection, and nothing came back positive. So, they just observed her over the weekend.
We were supposed to go home yesterday but our home health agency didn't have anyone available to come out and re-admit her at home, so we we decided we would leave early this morning. However, we found out yesterday, just before she got one more dose of it, that her Flagyl (antibiotic for C-Diff) had been mixed with  Dextrose (sugar/carbs), so of course she's been getting about 8 doses of that since she's been here and it seems like it may have caused her to have more seizure-like movements. Right now, we decided not to go home today and monitor her on an EEG so we can see if the movements are seizures or not. She sort of bites her tongue and holds her breath too, so we just don't want her to wear herself out or turn blue because of these. Of course, we filed another incident report with the hospital, since the same happened recently at the Santa Monica hospital where they gave her a med mixed with sugar and it messed her up.
I also had to deal with a very unpleasant doctor here in the PICU who in morning rounds said to me "So, it seems like she's been here at the hospital more often recently, like she's had to come back more frequently than before when she was at home for longer. I mean, it seems like she's getting worse, right? instead of getting better, since she's had to come back to the hospital more often now? Is that true?" of course, my response was "yeah, thanks for pointing that out". The way he said it though, was so rude and tactless, and he may have not meant it but this is the same doctor who, when she had the big seizure last year, told us "well, I don't think she's getting better, every time I see her she's doing worse, I don't think she's going to make it"
So, yeah, I was really mad, I mean what right does this jerk have to say that to me? Doesn't he realize that we know she has a degenerative disease, that we don't need to hear his negative BS? Since I'm tired of getting mad and not saying anything, I just asked him straight out, when he came into our room a few minutes later, what he meant by that comment, what did he imply? Of course, he didn't know what I was talking about and said he didn't imply anything, that he was just asking to be sure if it was true that she had been to the hospital more recently. So, I told him that he didn't need to phrase the question that way, he could have just looked at her chart, where all the information is anyway. he didn't need to sound so negative, and point out the obvious, that she isn't doing as well as she was last year. I don't need to hear that from him, I know already and I don't want negative people like that around me or my child. He apologized about 4 times, he said he didn't mean to come across as abrupt, but he didn't mean any harm by it. I was still mad though, because I could tell it wasn't really sincere, but I'm glad that I stood up to him and told him how I felt. I have learned that I can't keep my mouth shut when it comes to things like that. People then think they can talk to you that way, and I'll be damned if I let him do that. I don't want negative energy around my daughter, she has enough with this disease. I want to be positive, and hopeful, like her neurologists are. They told us that (despite this little set back) her brain was doing better than before at least, and really the reasons she's been in the hospital have been more because of her immune system being too weak to fight off infections.
Zev actually emailed the patient relations person from the hospital about the wrong medication that was given and about the doctor who was an a-hole and we're scheduled to talk to her and her boss today about all the issues we've encountered at UCLA.
Anyway, we'll see what the EEG shows and keep you all posted with new info as we get it. For now, please continue to pray for  our baby. We love you all and thank you for your continued support

Peace


Frani

Thursday, July 19, 2012

Fun times in the hospital

hey guys,
we were shooting this video over the weekend to show you how Leah was doing, it's funny...
:)


Also, we are came home yesterday! woot!
i'll post a larger update later

Peace!
Frani

Monday, July 16, 2012

Cough Assist and Vest

Hi everyone,
Most of you may know that Leah is back in the PICU this week (since last Friday). This time, she was having difficulty keeping her oxygen saturation at 100 and kept going down to 89, 90, 94, 87, etc. Typically she always stays at 100 or 99, and when I listened to her lungs, they sounded so full of mucous, but we couldn't suction any of it.
I was afraid that we'd have another scare like last time so we packed the car up early and took her to the ER  on Friday morning. We decided to bring her to the Santa Monica hospital since it's smaller and it feels a bit homey-er than the Mattel children's hospital in Westwood.
Our stay so far has been pretty good, the staff is amazing and we loved seeing all her nurses from last time here this time too. We only really had one issue, which was that they lost her antibiotic eyedrops that we brought from home and that had cost us $200! because the insurance didn't cover it. So, it was a little crazy there for a while but they were able to have the Westwood pharmacy deliver it on time. We also found out that she has C-Diff, which is an infection that you get when you're on strong anti-biotics (which she has been for her UTI) and it kills to good bacteria in your stomach. So, C-Diff then grows and infects your stomach so now she has diarrhea, and of course because of that, she's been having some fevers :(
We also asked for a cough assist machine and a vest this visit as well, since they are machines that would help keep her lungs clear of any fluid. The Vest is a vest that is connected to a machine that vibrates so it shakes up all the secretions that collect in her lungs. Our lungs are typically full of condensation, because of our mouth and throat which are like a filter for our lungs, you can see the condensation on a window when you breath onto glass and it's cold. Most people move around alot during the day, so all the condensation gets moved around, or coughed out if there is something in our throats. Leah doesn't move much at all now, since she is so sedated from the seizure meds. Because of this, we can't leave her on her back for too long because fluid can collect in her lungs and give her pneumonia. This is why we have to move her to her sides and alternate moving her onto her back every couple of hours. Whenever we hear her lungs, we try to listen to see if there is any mucous blocking her airway, or making it hard for her to breathe, and if there is, we suction it out with a machine. But sometimes, if the secretions are really thick, they'll just hang out onto the walls of her lungs and we can't get them out, or they are in the lower part of her lungs where the suction catheter can't reach
So the Vest surrounds her torso and vibrates, helping mobilize the secretions and making it easier to get them all out. Then we use the cough assist machine, which, like the vent, gives her breathes but then quickly pulls it out, simulating a cough. This helps bring up any secretions in the lower part of her lungs. We are trying to get all this equipment before we leave so that she doesn't have to keep coming back to the hospital, but of course, the medical system is so easy to navigate (not), things take time. But, the good news, is that our medical supply company says that it should be in either tomorrow or Wednesday, so that's good. The Vest could take a little longer, but we're waiting to confirm if that's true.

Anyway, some good news is that I will be going to Star Wars Celebration VI!!! One of Leah's supporters, who wishes to remain anonymous paid for my plane ticket out there! A couple of people from her support group, Leah's Angels, also got us a hotel reservation and tickets to the convention too! (Thanks Dutch/Kathy/Stephen and Michael/Lisa Stanton!!!) I couldn't believe it when they called and told us the news. I am super excited, since I'll be able to meet all of the amazing people that I've been talking to through FB over the past year in person. I'll also be attending a special dinner in Leah's honor with another group of people from Leah's Angels, and I'm gonna meet Peter Mayhew and his wife! *geeking out*
Anyway, so yeah I've been prepping up for that, and it's a little scary to leave her and be so far away from her if something does happen, but I really want to meet all you amazing people who have been there for us throughout this last year, encouraging us with messages and comments, creating fundraisers and sending us money and just spreading the word about Leah. It's incredible to think how many people across the globe are so involved.


Because of this, we've teamed up with one of the senior producers I know from the video game industry  as well as another producer who works in TV on the show "Intervention", to work on a documentary about Leah, and how the global Star Wars community brought her story to light, and how that inspired even more people (not necessarily Star Wars fans) to know about her and pray for her. She really is so inspiring, as we've all seen her struggle with this disease that seems so weird, but is incredibly common among children, has no cure and also has much less advocacy than other diseases. But this documentary is not only about Leah, or about us, it's about you. You're the community who reads this, who sends us letters in the mail and messages on Facebook. You've been touched by this beautiful, resilient baby and I want the world to know about you too, because I know that we couldn't have gotten this far without your support. Not only your donations, but your emotional support too, sending us prayers and telling others about Leah, it's very inspiring. So, I'm asking that if you'd like to participate, please send us a video of how you learned about Leah, and how it's impacted your life. I get so many messages from people about this and if you're willing to share on camera, please interview yourself and send us a video of it. You can send the Youtube link to our email: princessleahdiaries@yahoo.com
I've told myself that this project will be completed by her next birthday, February 17th, 2013, when she'll turn 2, but I'd like to get as much footage as possible before then of course, so we can edit it all together. I'll probably post a video request video on Youtube later too, so you can share.

And, here are some pictures!


Being admitted from the ER
Fevers are no fun :(

The cough assist machine
trying to bring down her fever


where's leah? lol
sleeping beauty



best daddy ever!
Grandma came to care for her on the weekend while we did laundry


Thank you once more for all your support, I will post another update when we're getting ready to leave the hospital.
Peace!
Frani