Another night...

This seems to be a common theme these days.
Nausea. Dizziness. Pain.
It's all day, every day but it intensifies at night. My dog Mayzee is sticking to my side of the bed now instead of Justin's. She has always been very in tune with me and my body, so when I am not feeling well she tends to stick with me. There have been many times where she has alerted me to presyncope (close to passing out) episodes. While I find it comforting, it is also slightly discouraging, because it means that my body isn't doing so well.

So instead of sleeping, like I want to. I lie in bed. Trying to change positions in hopes that the nausea will subside enough for me to finally sleep. Or watching re-runs of my favorite shows, which is one of the things I find comforting as both a person with Autism and chronic illness. I find repetition is one of the only comforts I can take at times like these.
Isn't it ironic that I have an energy wasting disease and yet one of my most problematic symptoms is insomnia? The funny thing is, I'm not the only one. Many of my friends and I have had late night conversations precisely for that reason. When I was single, or even before I had children, I didn't have to worry about not being able to sleep at night. Sure, it was a huge pain, but at least whenever I did sleep, I didn't have to worry about doing anything.

Now I have two little girls who rely on me for everything. I am incredibly grateful for them. They give me a reason to keep going, and they bring me indescribable joy. But even so, Lydia and Nora Grace need me. They need me so much. Lydia at nearly two years old absolutely loves being read to, and will ask you to read the same books over and over again. She asks to watch "Bob" (Veggie Tales) and spends time playing and learning more and more about the world every day. Nora Grace is finally beginning to thrive, after nearly three months of struggling. She is now able to hold her head up without help (though it is shaky) and can get her hands into her mouth. The surgeries have given her a much better quality of life and we have so much hope for her future.

Unfortunately, Nora is battling an infection in her trach. It all started a few weeks ago, possibly a month ago. I noticed the drainage from her trach had a foul odor to it, so the on call ENT ordered some antibiotics. After the weekend was over, I called her Pulmonologist and asked if she wanted us to get a culture of her trach secretions. She agreed that was a good idea. So then we saw her doctor here in town and we ended up getting a sample. They told us that it probably wouldn't show any results until the end of the week. I called them at the end of the week and they said that the culture showed one particular bacteria, Staphylococcus Aureus (not MRSA though) and stated that the antibiotic we had Nora on should take care of it.

Now here we are. The antibiotics have been completed. She still seems to be battling something. She has been sleeping a lot more than usual. She does have some times where she is happy, but today especially she has slept most of the day. I'd be lying if I said I wasn't concerned about her. Last week when I talked to them about things, her Pulmonogist's nurse told me that Nora didn't just have the staph in that sample. There was also a bacteria called Pseudomonas. The antibiotic they had her on did not cover that particular organism. So now we need to get a very particular nebulizer treatment to treat that. OK fine.

But the hiccup is that only certain pharmacies carry the neb that she needs. Our local pharmacy does not. Rather than calling me to let me know, I had to call to ask and that is when they finally told me. Then when I did call, they told me I had to talk to another pharmacy that could get it for us. When I called them, they said I needed to call the doctor to get an order. Mind you, this is on Friday evening so past office hours. I ended up calling the on-call and they said that our home pharmacy should be able to send the prescription to the pharmacy that can get it for us. Now on Monday I haven't heard where they are on any of this.

Oh, and the seating evaluation STILL has not happened. I'm absolutely livid about this. I finally called someone on our team at the hospital so that they could help me fight the battle because I just don't have it in me to do it on my own anymore. They are also at a loss as to why this is happening, so I am hoping that they are able to make some progress on that this week. The cart that we have is an absolute joke and I am tired of trying to get that ridiculous thing in and out of my car!

Nora has follow ups with Pulmonology and GI on Wednesday. I have a good feeling she has gained some weight this time around, so I am sure they will be very pleased about that.

Lydia saw the GI doctor last month, the same time Nora saw him for the first time. This is the GI doctor that Lydia has seen since she was a small infant. Lydia has really been struggling with Acid Reflux for most of her life. We were told that she would likely grow out of it, but it just hasn't happened yet. After she eats, she has a tendency to get quite bloated and "urpy." You can smell the acid in her breath after you hear her burp, and at times she has some undigested food come back up. Overall it seems to be a big problem. She's been on a medication to help her, and it seemed to help for a while but I'm afraid she just isn't getting as much benefit from it as she used to.

Both girls also had meetings for the school district to get services started for their early intervention programs. Though Lydia is doing very well right now (advanced for her age in vocabulary especially), there is a risk that the seizure activity could return. When she was diagnosed, we were given a 15-20% chance that she would grow out of them completely. The fact that she responded so well to the ACTH treatment is encouraging, but we are all in agreement that keeping an eye on her and her development is what is best for her. Our goals for Nora are to not seeing any more progression, and to at least maintain what abilities she has currently.

Last week we opened our case with the home care company we were referred to at discharge. I am hired full time to care for Nora at home. There is another nurse that has been hired to help us with some of these hours. It will be good to have someone to help with Nora so that I can do some things by and for myself, such as going to lunch with friends or just a day trip. For the most part, we all stay at home, but I do know that if I stay at home the entire winter I may go just a little stir crazy. Though for the most part I would say I'm a home-body and would prefer to stay in my cozy house with my babies than go anywhere.

Anyway.

I see my neurologist again in January. Unfortunately my muscle biopsy was inconclusive, so we may need to look at pursuing genetic testing if possible. There is always the possibility that medical science just hasn't caught up and that I will not able able to get a genetic diagnosis anytime soon. For the most part, that just is what it is, even if it is incredibly frustrating. Having a diagnosis isn't everything, but it would at least be a step in the right direction. I am hoping also to ask him about finding a GI doctor. I have seen a lot of GI doctors, most of whom have told me that I am too complex for them to manage. While I can understand it, hearing that over and over is incredibly discouraging and doesn't help me much at all. I truthfully have had it with all of my GI issues. They are at the moment the most troublesome symptoms. I have had these symptoms for a very long time. I have significantly modified my diet. I no longer have gluten, onions, garlic and other foods that ferment in the gut. For a long while after making these changes, I had pretty good luck and though my symptoms didn't go away, they were much more manageable. Now they are getting bad again.

When I am tired and not feeling well, my sensory issues tend to take over. The smallest things make me angry and the smallest noises can cause my skin to crawl. Even hearing Justin snoring next to me (sorry Justin, it's the truth) is too much for me. Getting overheated is not just annoying but unbearable.

Gosh, I sound like I am whining. Over and over again. I guess right now I am just having a really hard time. Physically, emotionally and otherwise. I keep putting one foot in front of the other despite the fact that my energy is seriously lacking. I need to do some major soul searching to figure out what is best for me on a few different levels. I fully realize that if I am not at my best I can not take care of my girls. For me that is unacceptable.

Like I've said before. I will get through this. I am just struggling so much.
I miss sleeping.
I miss my daughter.
I miss having times where I wasn't in pain.

But, I keep putting one foot in front of the other. Five minutes at a time. Slowly building up from there.

Hopefully our appointments on Wednesday are helpful and productive. God knows we need some good things in our corner. Though I will say time and time again, He is not who I am angry with. If anything, He is the reason I keep going every day.

But for now, I will hope and pray I can fall asleep soon. Morning will be here before I know it, and I have feeds to start, babies to feed, clothe, and care for, and plenty of housework.

Never a dull moment.

Oh and did I mention I'm dabbling into secretary work as well? I make several calls each day to make sure my family has what they need. It is exhausting but I have managed so far, and will continue to do so as long as I am able.

I'm sorry, this post did get a little wordy. But it's an update of sorts, so there you have it.