Looking Ahead to 2013!

Since my last post, we made and went to an appointment with Analeigh's Physical Medicine & Rehabilitation doctor (PM&R) at Texas Children's. We explained the worsening pain we believed she was experiencing which brought about a number of things. First, they put her on Baclofen which is a muscle relaxer in order to help loosen some of her tone. Second, we discussed and scheduled Botox injections for her ankles (which we will do on March 21st, 2013). The injections will be followed by fittings for braces, all in an effort to prevent her contractures for worsening. They do not expect the procedure to correct the problem, but rather maintain her current state. Dr. Collier referred us to have labs drawn and x-rays done which we did a few days after our appointment with her.

I got a call back from them saying the labs were slightly elevated but nothing to be concerned about (perhaps she's getting a cold or something) but the x-rays were cause for much concern. They revealed that her hip has indeed dislocated further and she has scoliosis. In addition to that, they said she has a condition that causes her to have weak bones which is not uncommon for kids with "Analeigh's problems". Because of this new information, we now have appointments scheduled with Ortho on Jan 17th, 2013 and a geneticist on April 25th, 2013.

Now, the Baclofen Dr. Collier prescribed has been a tremendous help in that Analeigh already seems to be much looser. Physical therapy said it's easier to work her out and we find that it's even easier to do the simple things such as bathe and dress her. BUT... yes, there's always a "but".... she suddenly stopped sleeping well and recently I noted some seizure-like behavior. I recalled that Dr. Collier mentioned that Baclofen lowers the seizure threshold for some patients which made a lot of sense with the behavior I was seeing. SO.... we already had an appointment scheduled with Neuro for Jan 10th, 2013 but I called them and explained the situation. They have agreed to increase her Keppra (anti-seizure medication) which I am hoping will not only slow/stop the seizure activity but help her sleep as well.

In the middle of all this, we suspect it's time to change trach sizes so we have an appointment scheduled with her ENT on February 5th. It's also time to pick out a bed for her that Medicaid will pay for when she turns 3. It takes a long time to push these things through so we have to get started pretty soon if we want it within a few months after her third birthday... so that appointment is scheduled for February 19th. We also have a follow up appointment with her pulmonologist on Jan 22nd.

It appears we opened Pandora's box with that initial visit to PM&R but we knew it was time to do something. We had no idea it would lead to such a crazy schedule or that we'd discover so many underlying issues we didn't even know existed. We were really just after some kind of pain management plan but it's turned into a whole mess of things. I just hope that there is light at the end of this tunnel for Analeigh. I don't want her in pain if we can manage that. I don't expect the doctors to come up with some miracle cure... I don't expect that she will ever walk. I do, however, hope and pray that we find a way to keep her pain level at a minimum and get her weight bearing so that surgery on her dislocated hip becomes an option we can actually consider.

With all of this being said... we had a good Christmas this year. I had won a free family session with a very talented photographer that I used for our Christmas pictures this year and she did a fantastic job for us! The kids all looked beautiful! We did Christmas Eve at home with Analeigh and then spent Christmas Day at my parents' house with the whole family. 2013 is going to prove to be a busy and trying year for us but I'm hoping that with the challenges come some blessings. We'll be looking for a new place to live in the middle of all of our appointments and I'm praying now that God steers us in the direction we need to go. We have some very specific needs and I'm hopeful we find the place for us that meets them all. Especially since Michael's job is supposed to start picking up after the first of January and it's possible he'll be away from home a lot more.

I just realized I forgot to mention that our newest addition, Brennen Craig, was born as scheduled on November 13th at 1:30pm. He was 9 lbs, 10oz and 21" long... and absolutely perfect! He's about 1 1/2 months old now and a pretty good baby. He has a little bit of a problem with newborn constipation but other than that, he's a good boy. :) Jayden gives him kisses all the time and wants to hold him every now and then which is really sweet to watch. Analeigh doesn't seem all that aware of her new brother but I think somehow she knows he's here.

I'm going to post a few of the kids' Christmas pictures for y'all to see... I'm so very proud of them!! Hope you all had a very Merry Christmas and have a wonderful new year!

An overview of the past 8 months...

It's been quite a while since my last post. A lot has happened but then a lot is also still the same. In March we discovered we were expecting a new baby, a boy to be specific. He's scheduled to be born on November 13th and will be named Brennen Craig. We celebrated Jayden's 1st birthday on September 6th (his party was on the 8th) and Analeigh turned 2.5 years old on October 9th. The first photo above is a picture of the kids in their Jake & The Neverland Pirate costumes from Jayden's party. He was Jake, of course, and she was Izzy. They were both absolutely adorable.

The second photo is a recent picture of Jayden giving his sissy kisses. I can tell he loves her and I'm sure we'll see that even more as time goes by. I can't really tell you what she thinks of him but I am sure she loves him too!! I don't know what he's going to think of a little brother but we shall soon see.

Things with the new nursing agency have been going pretty well. We got to keep a couple of our regular nurses, one who has been with us since the very beginning and another we picked up about a year and a half ago. We had a new night nurse who was pregnant and ended up on bed rest until her baby was born so we now have a new night nurse who also recently discovered she was pregnant. I guess it's in the water these days lol.

Michael had gotten a very good new job but after 6 months was let go. The last couple of months have been very trying for us to say the least. He found a new job with a reputable company but it took weeks to get through the hiring process and now he's in training. So, the money isn't going to be that great for a while and we had to give up our place and move out to the country to a much smaller place that my parents' friends so graciously offered us. I'm having a hard time being so far away from everything but I keep telling myself it's only temporary.

Analeigh just celebrated ONE WHOLE YEAR of being hospital free. That means no admissions since the end of October last year. She had one outpatient procedure when we had to have her GJ replaced a few months back but it was not an overnight stay. Things with her have pretty much been the same which is actually welcome because it means she has not been sick enough to land herself in the hospital. We saw a different Analeigh after we got rid of the nurse we believed was drugging her and that version of her has become her new normal since February.

She has considerable pain from her dislocated hip that we are still managing with her regular doses of Diazepam and frequent doses of Ibuprofen. Surgery is not an option because she is not weight-bearing and her hip would just dislocate again after having gone through a very painful surgery and recovery.... so, for the time being we are just trying to keep her as comfortable as we can. Other than that, we haven't really made any significant changes to her vent settings. The pulmonologist recently adjusted her tidal volume and tried to go down on her breath rate but we had to go back up. The changes were only made in an effort to make her settings more age appropriate since she's getting bigger. She has been on 1/2 liter of oxygen for some time now and can occasionally go for several hours without any oxygen... it's really a comfort thing for her.

Other than all of this, we've just been trying to make it day to day and awaiting Brennen's arrival. I'm so glad it's almost over as this pregnancy has by far been the most painful and miserable for me. To top it all off, I have developed a chest cold that has brought coughing spells that seem to have strained a muscle in my stomach so that every time I cough it feels like someone is cutting into my belly. Looking forward to his newborn pictures on the 25th of this month and family Christmas photos on December 8th (both free sessions I won from fabulous photographers). Hoping we can get through the holidays and start saving up to find us a new place that we'll love and that will give the kids everything they need.

I'm probably leaving a lot out but these are the highlights of the last 8 months or so....

Latest news...

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:

My Smart Girl

So, Analeigh had vision therapy on Monday. The nurse, Mary, set her up in her Kid Kart so we could use the tray for the toys the therapist, DeDe, brought with her. First, DeDe tried various toys that were attached to the lid of a Rubbermaid container... she didn't really seem very enthused by that. Next, they introduced some black & white patterns printed on paper which apparently was very popular with her because she got extremely upset when DeDe took them away. Next on the agenda was this thing with about 8 squares attached by velcro. Each square had a different texture... one had large bumps on it and was red, another was a mirror and still another, something very soft. DeDe put Analeigh's hands on the squares at either end (the red bumpy one and the soft one) with the mirror square in the middle. Analeigh was reclined back in her Kid Kart (because she rarely tolerates sitting straight up) but she brought her head all the way down to the tray in front of her and started making a strange sucking noise with her head turned to the side. I corrected her posture a couple of times but she kept on putting her head down very close to the tray.

We finally decided that she was trying to put the red bumpy square in her mouth and it appeared she was looking at herself in the mirror. So, we decided to stop correcting her posture but rather watch what she did for a while. She kept her head very close to the tray, making that sucking sound with her head turned to the side. I thought maybe, just maybe, she was doing this because she wanted to see the toys. After a little while, she took both hands and put them on her tray, pushed her weight up until she was all the way back in the Kid Kart that was still in a reclined position. I was impressed!! Then after a minute or so, she put her head back down close to the tray and did the same things all over again... and then pushed all her weight back up on her own AGAIN.

I don't know what any of this means but she impressed me, Mary AND DeDe. DeDe says she believes Analeigh has some vision... we don't know how clear or how far she can see, but she seems to react to certain things. When DeDe took the toy with the squares away, Analeigh got very upset until she turned her head and saw the shiny purple pom pom they had hung up next to her... after a while she would turn her head the other way and when she looked back at the pom pom she appeared to have a look on her face like, "Oh, there it is!" Mary says she thinks Analeigh is going to surprise us all one day with what she can do! I hope and pray that she does! Just thought I would share because I really was impressed by her! :)

EEG Results are in!!

The results of Analeigh's EEG are in. The last EEG she had showed little to no brain activity (shortly after the initial injury on 1.21.11), but now there is "quite a bit of brain activity". She is at a great risk for seizures judging by this EEG but they only registered one 8 second "abnormality"... usually the abnormality has to last at least 10 seconds to be considered a seizure but she said if she is clinically (visually) doing something (what we've been seeing her do), then it is probably a seizure and to err on the side of caution, they're going to call it that. There is something that regulates activity in the back of her brain that didn't have a lot of activity (can't remember what she called it) but it is common in kids with brain injuries that are blind (she has cortical blindness) so we are not shocked with that result. She will be staying on her current dose of Keppra for the time being. I'm fairly pleased with the results because a) it means she is not having big, scary seizures and b) she has more brain activity than she did a year ago!!

I like to think this means she has some awareness of her surroundings though I do not know to what degree. The doctor did not say this, it's just what I hope. She did sound positive though (which is a nice change coming from a neurologist) so I'm going to consider this to be GOOD NEWS overall!

 

Analeigh's Latest News

Well, where do I start? I know it's been a while so here we go...

Analeigh has managed to stay out of the hospital since the end of October when her GJ was accidentally dislodged. We've not had any bouts of pneumonia and she's pretty much only been to the doctor for routine maintenance. We fired the old neurologist and hired a new one (a woman this time who seems much more interested in Analeigh and what I have to say about her). She's been weaning off of the Phenobarbital (anti-seizure medication that is also a narcotic) and has been put on Keppra (a different anti-seizure medication that is non-narcotic) for the time being. We had an EEG done on January 5th and will be getting the results on January 17th. We thought she might be having seizures but I'm not sure now that she really is. I guess we'll find out soon enough though (this coming Tuesday).

Analeigh also saw Physical Medicine for the first time at the end of December. They increased her Diazepam to help with spasticity and ordered a pelvic x-ray that we just had done this past Thursday. Results from that are in and apparently her right hip is dislocated and she has some weak bones. This is a "common issue" in "these types of patients" and there's really nothing they can do about it. I was told by the doctor that if she begins experiencing excruciating pain from it, they might consider surgery but not until after she turns 2. For now, I think her pain level is minimal and can be treated with the Diazepam and Ibuprofen. She said later on there is the option of a Baclofen pump but I've already researched that and made up my mind that the risk of infection far outweighs any benefit she might get from it.

We also just saw her Gastro doctor who wants her to go on a diet... yep, her first diet at 21 months old lol. Apparently her weight is not proportionate with her height so they cut her feedings by 50ml per day (which means she gets to spend 1.5 hours per day off of the feeding pump.. yay!). I asked about the possibility of ever working her back to G-tube feedings rather than GJ and she said at some point in the future we might try it. She will want to repeat the swallow study and upper GI first and it will be later on but that was enough to satisfy me. I just can't stand the thought of knowing there's nothing in her stomach and worry often whether or not she ever feels hungry.

Last on the list of new things... I fired her regular day nurse and gave the spot to a nurse who covered our night shifts while our regular night nurse was out having surgery. This particular nurse (the one I fired) had been with us for over a year (almost since the beginning) but had apparently forgotten her place somewhere along the way. She was saying all kinds of mean, hurtful things about me behind my back, openly refusing to do things I asked her to do (such as opening Analeigh's curtain, changing her linen 3 times per week and doing various exercises/positioning with her). Anyway, I won't go into further detail but things are much more relaxed with the new day nurse and I'm much happier!

Well folks, that should do it for now. If I think of anything else, I'll be sure to post again. :)