Sorry I've been AFK for a while, it's been hard to find the time to write recently.
So, her left eye cataract surgery was a success, everything went well and her eye is healing nicely. When they did the surgery, they also took a little piece of tissue from her conjuntiva so that they could study that AND the cataract that they removed. The ophthalmology doctors have been coming in to take a look at her eye for the past couple of days and are happy with how it looks. Leah also got her prescription for her glasses and we are going to look at some of the frame designs and size her for frames tomorrow. I will hopefully have some pics for you then.
Neurologists and us have noticed a significant difference in her movements with the Tegritol she's been getting. She started it last Monday but they increased the dosage on Wednesday or Thursday and it really seems to be helping with the "fits" she has. I don't think we've seen one in the past couple of days actually. Her overall movements have also improved and her eye movements seem to be lessened, although she still has some fluttering up and down of her eyes.
What's even better is that we are no longer in the PICU! We have been moved to the regular floor as she is much more stable now. We moved a couple days ago and she's been doing really well. The only bad thing now, is that she's gotten a bacterial infection in her trach area, called Tracheitis. She had been having increased heart rate, body temperature and secretions, so they got some of her secretion cultures and
found that she had some bacteria there and lots of white blood cells. They are still waiting for the viral cultures to grow to see if she has a virus as well. They've started her on a couple antibiotics, which of course have given her diarrhea (ew, I know). She also has been vomiting a bit too, which could be because she is swallowing her secretions and they upset her stomach. The vomiting is also caused by having to suction her trach out so much; every time we suction her she coughs a little bit to help get the mucous out, but that triggers her gag reflex and she vomits. So, the past couple days she's been feeling pretty icky, but at least she's being treated for that and it won't last for too long.
Neuro also told us that the tests they sent to look at her amino acids looked normal and they were going to continue investigating. They were happy that the Tegritol seems to work though. The Exome gene sequencing is still in progress.
Her pulmonologist came by and said that they would start her on some Pulmicort, and increase her doses of Xopenex to every 4 hours to help release her secretions. He was able to see some mucous plugs in her lungs when they did a chest X-Ray, so hopefully the 2 treatments will help her out. He was also going to reduce the oxygen support she is getting on her trach collar from 30% to 28%, and if she tolerates it, he may even bring it down to room air (21%). Then she would only need to trach collar to push moisture into her trach.
We did a have a little scare 2 night ago where she was sleeping but she started de-sating and her oxygen went down to 70%. She would come back up though after a little bit. Her tummy looked really big and after they did an X-Ray they saw that she had a lot of gas, so they were able to suck air out of her stomach with her NG tube. After they did that, she was breathing a little better and her oxygen sats stayed at 100%, but the next day they found the infection, so it could have been attributed to that as well.
For now, she's being treated and seems to be pretty comfy while she sleeps. She's been sleeping a lot, I guess feeling that sick is just tiring her out a lot.
When talking with the neuro team, they mentioned it could be something that have never even been diagnosed, something new. At least she isn't having any degradation, or at least it doesn't seem that way anymore. It did at the very beginning, but now she's smiling more, and breathing better and it seems like she's doing better with her movements with this new med.
We'll be spending 4th of July here in the hospital, add one more holiday to the list that we've spent here. But, we'll have some friends come over later and maybe get to watch some fireworks from the hospital window.
I'm starting to see some light at the end of the tunnel, as I see her (apparently) get better. But only time will tell, for now: Thank you to everyone who has reached out to us and supported us, it has meant so much to us.
I will try to post some more tomorrow