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: email@example.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|
|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.