Thursday, June 16, 2011

New Developments,

Hey Everyone,
Sorry I haven't posted in a while, there has been a lot going on and haven't had the time or energy to write anything.
So, they didn't start the Carbidopa-Levadopa last Friday like we thought they would in the previous post. There was some issue with getting the correct dosage so they moved it to Monday, which then moved to Tuesday because the Neuro team wanted to be around when she got it and on Monday they were all in clinic in the afternoon.
Anyway, on Friday night, after I got back from work, we were getting her bed made after giving her a bath. As I was holding her, I noticed that her eyes looked a little foggy from a certain angle. It was hard to make out, and at first I thought it was just glare. I mentioned it to our nurse, who dismissed it as her eyes probably being too dry, and gave her some eye drops.
As the night went on, it became more and more noticeable to me, so I asked to see the on call resident that night, the nurse said ok, but it she didn't think anything was wrong. I was on my way to the lactation room later that night and I bumped into the resident doctor and told her my concerns, since I figured the nurse still hadn't paged anyone to come see us (and I was right). She told me she would stop by, and she did, just 15 minutes later so I'm glad I caught her when I did. She came in a shined a flashlight onto Leah's eyes to see what I was talking about, and of course her pupils got tiny, so it was very hard for her to see what i was talking about. She also said it was probably just dryness of her eyes, but I wasn't buying it. The next morning there was a different resident, Dr. Feazell (who knows Leah since she was born at Cedar's) came in to look at her eyes, he did the same thing with the light, but was able to see a little of what I was talking about. He paged the ophthalmology team to see if they could come in for an emergency exam, since it was the weekend. They were able to come in and put some drops in her eyes to dilate her pupils. After that, they did the exam, with both the resident and the fellow from ophthalmology, they told us that she has cataracts in both her eyes, more in one than another. They don't really know how it's affecting her eyesight, they were not able to really look at her retina because the cataract was so cloudy. They said she is most likely seeing everything very blurry, more than usual for a baby.
On Saturday, her PICC (peripherally inserted central catheter ) line got obstructed somehow, so they were not able to flush any fluids through it. They tried to get an IV in her 4 times, but her veins kept blowing, and they could not get it. The only drug she was on that needed to go through the PICC was the Precedex, everything else could be administered the J-tube which goes through her nose into her intestines. They had no choice but to stop the Precedex and see what happens. They also gave her a Clonadine patch as a sedative instead of the Pentobarbitol, which seemed to help out and calm her. She reacted pretty well to being off the Precedex, so they didn't start it back up again after they fixed her PICC.
She started on her L-Dopa treatment on Tuesday, nothing really seemed to improve, and if it was to work, it would happen within a few hours. The Neuro team told us that because they have never given that medication in someone so small, that they were starting on a very low dose, so maybe they need to increase the dose if it doesn't seem to work. They are planning on increasing the dose tomorrow I think. It also could make things worse too, because in these types of movement disorders sometimes giving more dopamine helps, but sometimes taking away some of the dopamine works better. So, if the increased dose doesn't work, they might give something to take away more dopamine to see if that works. At this point everything is trial and error, since we don't have a clear diagnosis yet. There are still tests that are pending and might take 2-3 weeks to get those back.
The ophthalmology attending doctor came by yesterday morning to evaluate her eyes again. She was the same person who saw her last month when her eye exam looked normal and healthy. She said that they are planning on surgery to remove the cataracts in the next couple of weeks. They will do one eye at a time for the surgery and because she is so small, they can't replace the lens in her eye like to regularly do, so they will make her special contact lenses that she will wear until she is old enough to have the lens replaced (about 3-4 years old). If the contacts come out because of her involuntary eye movements, then she will ave o wear thick glasses (not a big deal, since Zev and I both wear glasses so she'll fit right in) The good thing she said is that because she has had normal visual stimulation since birth, her vision won't be as impaired as a baby who is born with cataracts, because many of the connections that the eye and the brain need to make have been made.Though she can't say what her vision will be like for sure. They have to coordinate with lots of different people for the surgery so that is why it will take a couple weeks.
Another exciting thing that happened the other day (and not a good "exciting") was while I was at work and Zev was at the hospital with Leah. This happened on Tuesday. She had been very agitated all day, was not sleeping at all, Zev tried everything to help calm her down but she was moving like crazy and really upset. She was even crying, but no sound coming out. They decided to give her a dose of the Pentobarbitol, since in the past, that had helped her out. She got her dose and fell asleep in Zev's arms, then suddenly just went completely limp. She had been having some apnea episodes again over the past few days so this was another one, but it was much worse than it had been. She was like a rag doll in is arms, and she started de-sating again, so the nurse came in and tried to wake her up but she wasn't responding. Finally, Zev have her a hard shove and she woke, but they decided to keep her on the ventilator so that if she has another episode, she would be ok.
It seems like it was a combination of the sedative and the tiredness from moving so much, so now they have her off of the vent while she's awake and they put it back on while she's sleeping. They are trying to plan for a sleep study to be done so that they can try and figure out what is causing the apnea. The sleep study will measure her brainwaves (EEG), her muscle response, her eye movements, her breathing and other aspects so it's great to see what her body is doing in all these tests. The only thing is that it is in the Santa Monica hospital so we'd have to move there for 1 night, then come back. Anyway, they are taking off the Clonapin and the pentobarbitol. The only thing she's on now for sedation is Ativan and Benadryl.

I've realized now that it's better to give updates every day or every 2 days, since I end up writing a whole novel when I don't update. Sorry for the wall of text, but around here there's something new everyday, so a weeks worth has lots of interesting stories to tell.

We also have been getting a huge support from our friends around the world on Facebook. Little Leah is proving to be a strong little fighter and loved by so many people, that she is inspiring people to come together to try and help us. The donations that have been pouring in are overwhelming, as well as the different events like the Star Wars raffle and RSO benefit patch sale featuring Leah. We feel lucky that we have so many people praying and hoping for our family. Even big Star Wars celebrities like Steve Sansweet, Peter Mayhew, Stephen Stanton and Catherine Taber are passing the word along and donating.

Leah has taught me so much in her short 4 months of life. She's taught me to live in the here and now, and to appreciate everyone and everything I have because life is short and we only have one. She's taught me that there are truly good people in the world who can and will help others when they need it, either financially, emotionally and spiritually. I've learned to be patient, not only with her, but while we wait for doctors and tests and some sort of diagnosis. I've learned that family is much more than people who share your blood; they are the people who you can count on for support and kind words. This is by far the hardest thing I've ever dealt with in my life, and I don't know how long we'll have this little angel by our sides, but I'm going to love her forever, no matter what.

I'll post more tomorrow
Peace,
Frani

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