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