Friday, December 7, 2012

December 7, 2012

Ok, so I think I got at least the last month worth of updates up on here. Sorry there isn't more ;)

Here's what been going on this week:

On Sunday we brought her to the ER, we'd noticed for the past 3 days or so, she was very tachycardic, meaning her heart rate when she was awake was very high, higher than normal for her, which could be indicating that she has an infection of some sort. So, we took her to the ER on Sunday night at 11pm, got admitted at 5:30 am, finally! The PICU at Santa Monica hospital was closed because they didn't have any sick kids, so they had to get everyone on call to come in and open it.
Turned out that she had a UTI, and it was a type of organism that is resistant to most antibiotics, except IV antibiotics, so they had to keep her admitted in the PICU.
Since sh'es been in, they've been making some changes to her blood pressure meds, because her blood pressure was too low. Then they also noticed that she was over ventilated on the hospital vent, so they lowered her rate to 18 breaths per minute from 28, and she was breathing some on her own, which is great news! They also noticed that when the vent got disconnected she was taking small fast breaths, which may be because they have been weaning her down off of some of her seizure meds and is not as sedated anymore.
The best part though, was that she has started to cough again, something she hasn't done in many months because of how much sedation shes had. Coughing is a good thing because it means she is trying to clear her lungs on her own and she also has enough energy to cough, which is really hard when you have mito. But, shes been gagging and coughing more, which is a huge improvement, and we are so happy about it.

Leah was not the only patient in the hospital this week, Zev also had to get surgery on Wednesday as well. He had been having a lot of pain in his testicular area recently and a urologist took a look and noticed that he had a growth on there that was causing it. It wasn't cancerous, but there was a chance that leaving it there could cause a lot more pain than Zev could bear and he didn't want that, so they were removed in surgery. We decided it would be the best thing to do, since we cant have anymore kids anyway, as mito is genetic too. Surgery went really well, Zev was in tears when they were putting the IVs in, not because it was hurting,  but because he thought of all the procedures Leah has been through and how many times she's had to go to surgery and be int he hospital and he felt very sad. I had gone to eat food while they were prepping him, so he dint think he would see me before surgery but i got back just in time to come in and see him get wheeled into the OR. He was happy and still crying a bit, because he thought he wouldn't see me before and wanted to give me a kiss, in case something bad happened, but I came in and got to see him and give him a kiss good luck. And that's when he got the Valium... haha, he was giggling and laughing and saying that everything was slowing down a lot. So, at least he didn't go into surgery while he was freaking out. He was able to go home about an hour after the procedure, but he wanted to go to the hospital and see Leah. I  got him a wheelchair there (the perks of having your child in the hospital) and wheeled him up and the first thing he did was get up (in pain) and hobble over to her side to give her kisses. He said that the pain was bearable ubt that he couldnt bear not to be with his princess, he is my hero :) Or course,he laid on the bed and slept for a few hours after that. We got my mom to spend the night with Leah in the hospital so that i could accompany Zev home for the night and he's been recovering more each day, but is still in pain.

So, we were supposed to go home today, but she had a little seizure again today, which we think could be from this RSV shot that she got a couple days ago. It caused a low grade fever for her, but they weren't worried too much about it, but she is also dealing with the infection, plus now we found out she has C-dif, which is a bacteria that you get from too many antibiotics,and we are treating it by giving her more antibiotics. The neurologist said that the seizure is probably from everything she's been going through and that when shes sick like this, and has shots, it can lower her seizure threshold, so she's not worried for now, as long as it was just that little one and not something longer. Her blood pressure has also bee kinda low so they are trying to stabilize that before she goes home too. So, we'll probably go home on Monday if all goes well over the weekend.

thanks to everyone who has been messaging us, with concern about Leah, we really appreciate how much you care about her. We are sorry we couldn't update sooner but we had a lot going on and barely had time to take naps. But thank you once again for all your support, we love your global family and will keep you all updated over the weekend
Lots of love

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