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So, the preliminary results of Analeigh's UA only tested positive for Benzodiazepines (which we knew would happen because of her Diazepam/Valium). They are doing further testing that is supposed to differentiate between all meds in that class, but we were also told that if she was given Xanax (in the Benzo class), it would have been out of her system within 11 hours of the last dose.. she didn't get the UA until one week after the last suspected dose. So, it doesn't look too promising.

I've been back and forth in my head as far as doubt about whether or not we could still be wrong about what we think happened. One minute, I panic and think I did the wrong thing and the next -- I look at her and everything she's doing now and consider the 4 days of withdrawal-type behavior -- I look at the evidence and feel like there's no way we could be wrong. We may be wrong about what she was given or it all may have been meds that would not show up in her urine 1 week after the fact.... but what is not deniable is the fact that SHE IS DIFFERENT! She's not lethargic anymore but calm, she hasn't had anymore desat episodes, she tries to reach for things, is better at focusing on things, does that thing with her mouth when tickled, is starting to rub her face when she stretches and seems like she has less spasticity. I think she understands some things we say to her now and I honestly believe that LIFE has returned to her eyes.... I just don't see how that could be coincidence.

Anyway, regardless of whether we were wrong or right -- better safe than sorry, right?! I will say that I refilled her script for Diazepam before I fired the nurse and somehow I have come up a week and a half or so short on her Diazepam script. Seems kind of funny if you ask me!

I met with a new nursing agency on Monday and we're hoping to make the switch as early as Friday. They said they already have 6 nurses lined up to help out until we get permanent staff which is awesome. They think they have this entire weekend staffed (days and nights). I just know rules will be much stricter for nurses now and I'm going to have to try my best not to get overly friendly with any of them. You meet some great people and having to take this approach may mean not making friends I would otherwise LOVE to have but logically, the professional boundaries are there for a reason. They are not meant to be crossed. I see that now.

Okay folks, that's it for now!

Leaps and Bounds

In the week since we let the night nurse go, Analeigh has begun doing things she hasn't ever done before. One of them (shown in the above video) is that she is responding to being tickled by her day nurse with a brand new facial expression using her mouth. Since the brain injury happened on Jan 21, 2011, she has only ever kept her mouth hanging open. Now, she can draw up her bottom lip (as you can see) AND when I touch her nose or her upper lip, she can close her mouth completely. It's so amazing!! I cannot wait to see what she does next!

As far as the situation regarding the nurse, we had a UA (urine analysis) done at her pedi's office on Thursday. If she was indeed given Xanax, it would have been out of her system within 11 hours of the last dose (and therefore not detectable on the UA). We made them go ahead and do it anyway in case there were any other drugs she could have been given. I do not yet have results and probably won't until Monday.

The drama has begun with all the he said/she said accusations... no doubt because the agency has called in the State for the investigation and the nurse was subjected to a UA as well. If anything in her UA matches anything in Analeigh's... she could be terminated. If not, the agency will be forced to keep her on and put her on another case to avoid a wrongful termination suit. We are keeping our fingers crossed and praying that something shows up so that she won't have the opportunity to do it to anyone else's child (if in fact, she did do this to Analeigh).

As each day goes by, I see more and more of the old Analeigh we used to know. The sparkle in her baby blues is coming back and with it, my hope. I had quietly accepted all the "She'll nevers" the doctors told me but now... now they can't convince me that she isn't capable of so much more! I can't believe the progress in a mere week! Just imagine what she might do a month from now, six months from now! I don't care if the UA comes back negative for everything... the coincidence is too great and nothing she could say would ever convince me that she wasn't doing something to my child! At least we will be able to rest with the knowledge that Analeigh is safe now and free to blossom and grow! :)

Update on Recent Events

So, some things have gone down today... first off, the pedi's office FINALLY got back to me. We have an appointment tomorrow afternoon (which was the first available) for the drug screen. The nurse told me that if something like this ever were to happen again, it would be an emergent situation and we should take her to the nearest ER for an immediate drug screen. I did not know this and I don't think any of us ever even considered that option.... it seems so obvious now that it makes me feel kinda stupid but I guess with all the craziness we simply over-thought it and missed the most plausible solution. Live and learn.

I also spoke with the head honcho of the pediatric nursing agency we use. It turns out that the DON (Director of Nursing) I e-mailed about the situation (who is notorious for not handling client complaints regarding nurses very well) has been let go. So, he (the head honcho) told me that the nurse in question was immediately suspended pending the outcome of an investigation. I am supposed to contact him as soon as we have results for the drug screen and he is already communicating with the other 2 nurses left on our case for collaborating statements.

After we get some results, I'll file a complaint with the Texas Board of Nursing. I'm kind of hoping the agency will help me do that. If not, I will do it on my own... regardless of what the drug screen shows at this point, they need to be aware of the situation in case it was to ever happen again with a much different outcome.

I have received several well-meaning comments on Facebook.. and have just decided that since I can't possibly give every single detail of the situation to you all, a lot of your comments are based on limited information. Due to this, I ask that there not be anymore comments offering advice. I am handling the situation in the manner I feel is best for Analeigh and our family. If that doesn't meet your level of expectation, it doesn't matter. She's my child, this is MY home, MY family and MY life. I will do everything in my power to protect these things. With that said, I would very much appreciate prayers that the truth comes out and that the situation is put to rest in whatever way it needs to be.

Thank you all...

Parents Beware!!

The last few weeks, we started noticing a pattern with Analeigh. She was suddenly calmer during the week than what we were used to but would turn around and be extremely worked up on the weekends. At first, we didn't give it much thought... well, I didn't. I just chalked it up to her unpredictability and left it at that. Little did I know, there was much, much more to it.

Last week, my day nurse informed me that she had suspicions that Analeigh was being drugged at night by her Mon-Thurs night nurse. The logic seemed to fit her new pattern of behavior but I still found it very hard to accept that anyone in their right mind could do that do my daughter. Especially since the nurse in question had been with our family since the first night Analeigh came home from the NICU on October 4, 2010. I had thought it very strange when we discovered a half-dissolved Xanax in her bed but my night nurse has a prescription for it and said it must've fallen out of her pocket into the bed when she was changing Analeigh's diaper. It didn't feel quite right then but again, I never EVER would have suspected this nurse was capable of doing something so unthinkable!

The week went on and a noticeable pattern of lethargy during the day developed. She was even MORE unusually calm than normal and seemed completely out of sorts. By around 5pm each day, it was as if she suddenly returned to her normal self... Thursday came around and things took a turn for the worst. She was so lethargic that she was borderline non-responsive. I honestly think we could have ripped her arm off and she wouldn't have cared. Her normal spasticity was gone and even if you picked up and dropped her right leg (the one with the dislocated hip), she didn't make a face or object in any way. It was so drastically different that it was alarming. It became even more alarming when she desatted (meaning her oxygen saturation level dropped well below the acceptable range) and had to be given manual breaths on the vent (THREE different times... each worse than the one before). It was as if she was so out of it that she forgot to breathe. She was literally only taking the breaths the vent made her take.

I started pondering what my day nurse had told me, over and over and over again in my head... I dug deep for ANY other possible explanation. I then realized that the "diaper rash/ yeast infection" that had suddenly shown up had appeared around the same time we started noticing the higher level of lethargy in her. I started questioning whether or not it could be from an adverse reaction to a drug I didn't know she was being given. I knew she wasn't being left to sit in wet/dirty diapers and she almost NEVER gets diaper rash. I also knew she had not been on any antibiotics in quite some time.

The first thing that came to mind was to ask the doctor for a tox screen to either confirm or dismiss our suspicions. I then realized that if they did find something, they would be legally obligated to report it to CPS and I could not prove who gave it to her... just the nurse having scripts for the drugs would not be enough. So, I was in a position to lose my daughter one way or another by no fault of my own... unless I continued to sit back and do nothing. So, I let the night nurse go with an excuse I thought would be acceptable so that I could take over the night shifts myself and observe her behavior once we got through the weekend.

All weekend I watched her go through what appears to me to be withdrawals. She would sleep all day and tremble all over when awake with a high heart rate and visible irritability. Strangely enough, her urine output has also dwindled to nearly nothing. We were used to soaking wet diapers at almost the same time everyday and I haven't seen them for the last several days. It wasn't until we looked up possible negative reactions to Xanax and Trazodone (both of which this nurse had scripts for and both of which could cause the behavior we had been seeing) that I really became sick to my stomach (well, all over again)... she has so many symptoms of a severe reaction to BOTH of these drugs that would explain ALL of the strange behavior we've been seeing. The shaking, the rash, the elevated heart rate, the lethargy, the decreased urine output, etc.

I cannot begin to tell you how sick this has made me. I trusted this nurse with her life and now, even with no concrete proof, I truly believe she was drugging my daughter with her own medications. I cannot, for the life of me, understand what she hoped to gain from it. AND WHY?!! How can you look at that sweet face and know all she's been through and do that to her?! She could have KILLED her! Thank GOD for my day nurse who was looking out for her and brought her suspicions to me. I would have hated to be in her position, knowing how much we loved this particular nurse and having to completely crush us.

I've been trying to get Analeigh's pedi to call me back since Friday to get her an appointment. I have to know if that rash is from a severe reaction because it is not responding to constant treatment with diaper rash cream and Nystatin powder. The sad thing is, I am not even sure we can do anything to this nurse. We literally have no proof. It's all he said/she said. I'm terrified that she will move on to another case and drug that family's child... and this time, the child may not be so lucky! I know how the agency works... how most agencies work. They won't care what I say as long as I have no definitive proof. They'll just put her somewhere else, promise us she will never be back to our home and business will go on as usual.

Does anyone know what we can do?! Please don't comment unless you've encountered a similar situation and actually KNOW what can be done. I don't need anyone to tell me to fire her because that's already been done. And I don't need someone to tell me to report it to the agency because I know they will not do anything... I need someone bigger than the agency. Someone who can actually see to it that she can't do this to another child.

Since the nurse is gone, I see more of the Analeigh I was used to before she (the nurse) returned back from being out a couple of months for surgery. But in the midst of it all, she looks like a junkie needing a fix. The shakes, circles around her eyes, sleeping longer than usual with heart rate all over the place and a touch-me-not disposition. It's painful to watch but I know if we're right, she has to detox on her own. I can't give her anything to help ease her discomfort besides the regular doses of her regular meds and OTC meds like Ibuprofen.

I keep hoping that somehow we are wrong... that there is some other reasonable explanation for all of this but I just can't think of one. My heart hurts for her and also because of the betrayal I feel. I don't want to ruin her career if I'm wrong, but just don't see how I could be... I guess the next few days will either make me more convinced that we discovered the truth or it will prove me wrong. Please pray for her because if she is going through withdrawals, it can't be nice.

Parents of kids who receive pediatric in-home nursing, PLEASE beware! You can never know what goes on while you're sleeping so please, pay attention to your kids and investigate any unusual behavior. Don't do like I did and simply take for granted that your child is being taken care of in the proper manner. I think we have all encountered a few people in our lifetimes that were not who we first thought them to be, so don't assume your nurses (no matter how well you think you know them) are above being one of those people.

I have refrained from posting any of this on Facebook as I was worried this nurse could see the post and start spouting lies that could cause a major upset. I've already caught her in a couple of small ones since this has all gone down. She still has not been told the real reason she was fired but I think by the digging around she's been trying to do behind my back, she knows or at least suspects that we've figured out what she did and is waiting to see what/if we're going to do something about it. I only write this because my eyes have been opened and hope that by sharing,  yours will too.

I apologize now if in the end it is determined that my suspicions are wrong BUT I do not apologize for doing what I feel is best to keep my child safe from any harm that could possibly befall her... for now, I'm going to keep staying on the pedi until they get back with me about an appointment and then I'm going to see what they can do to determine whether or not her symptoms are related to an adverse drug reaction and/or withdrawals. I have no idea what the ramifications of all of this will be so PLEASE PLEASE PLEASE keep our family in your prayers!

Big Girl!

I took a video today of Analeigh when I put her pom pom on her kid kart tray. I think I mentioned in a previous post that she was putting her head down close to toys and making the sucking noise/motion... well, here it is in this video!

I don't really have any major updates, just wanted to share the video! So proud of my sweet girl... and love, love her new earrings!! She got her ears pierced and her first hair cut last Monday and I can't get over how cute she is! She did so well too! Not a single tear and she barely even made a face. Totally impressed myself and her nurse. Here's a picture of her right after having it done: