It is so good to be home! I found out so many things this week, fit together so many pieces of the puzzle. I'm completely exhausted, but my little Sweet Bean & I are home. Praise God!
The doctors ran many tests. They did an upper GI to rule out reflux, check for muscle weakness & rule out systemic disease. They did a pulminary test to check for asthma & systemic disease. They did a chest x-ray to make sure her lungs were clear, another sign of systemic disease. And they did the MRI. The ran labs many, many times. They checked blood pressure, temp & pulse oxidation many times as well. In the end, most of the tests were perfectly wonderful! I didn't get to sneak a peek at her labs from this stint. I wanted to, just to see if anything changed, see what new tests they ordered. Her blood pressure ran high the last few days, but they believe it is a result of the steroids. She had some very strong drugs in her system. She was also very anxious and simply didn't want to be there. One night they had to put a second IV line in her. She can't stand anything in her wrist. Her hands and wrists are deeply affected by most of the diseases, if not all. She freaked about that. I repeatedly heard about how she wasn't strong enough, she was too young for this, too little to be there, she just wanted to go home with Daddy and her siblings. She finally broke down a little bit one day. I've been waiting for that. She is so amazingly strong, mentally and physically. How can someone so little handle so much? I told her to ask God for strength the day of her MRI. She told me (after being given Atavan to calm her down) that she had asked God and he told her no. How heartbreaking!!! So many moments that were just hellish, and yet had to be done to either help her, or help to diagnose her.
In the end, I didn't find out about the pulminology tests, but the chest X-ray was clear, the upper GI showed no reflux, meaning that there is no systemic disease, but there is some muscle weakness from the Dermatomyositis (JDM) in her throat. The biggest test for her this time was the MRI. After several days on a high-dosage of Salu-Medrol and Toradol (powerful NSAID) every 6 hours via her IV port, her MRI still showed muscle inflammation. Her rash from the JDM wasn't very pronounced, but because of the Mixed Connective Tissue Disease the doctor said that it may be worse than it looks. Generally, the rash tells how mild or severe a case, but since she has overlap syndrome and so many other conditions it may be more developed. Piecing things together, I suspect she's had this since spring- about six months. I remember asking Kevin at home one night what he thought about possibly Fibromyalgia. I started collecting data on that, and thought for sure that might be it. The JDM isn't my favorite diagnosis as she will need to be on steroids for at least six months, but there is at least a possibility that it may disappear in a year or two. 1/3 of cases resolve permanently after treatment. We shall see. I hope that happens, but I prefer to prepare myself for the worst. This way I can handle the next curve ball. I always keep hope and my faith.
For those that don't believe in God, skip a paragraph please, or at least don't take offense! I have noticed how God uses other people, sometimes in the mildest of ways. When I decided that we needed a proper church to go to, I had five people in one week all talk about the church that I've always had in the back of my mind.
This past month, the word "Shands" has come up like twenty times in different conversations. From several it was as in "change now, go to Shands", and others it was them talking about positive experiences. Somehow, I had never heard of Shands until meeting my awesome Facebook JA Mom Squad. Several of them had told me how wonderful Shands was. Thank God I listened. If I was not the type to research, to try to understand what was happening, I would have blindly followed what the old doctor said, like a little sheep. Had I done that, I may ended up confining my child to a life trapped in a wheelchair, not being able to even brush her hair or teeth. That is what the other doctor said that we could expect before he dismissed us. This is why it is so important to do your own research!!! Advocating for yourself or your child is the single most important thing that you can do to help. I have prevented my child from being over-dosed twice now. How? Because I pay attention when it comes to her. I may be an oblivious, bumbling mess often outside of work and home, but I am very sharp when it comes to things like that. Paying attention can save lives. Even the best doctors will occasionally make mistakes, for they are only human. No one can think of everything! I am very pleased that I am on the same page with the new doctors. They have younger children- they have an idea how we feel. They want to do their best to help our children, and they aren't too lazy to do the right thing. I couldn't ask for more than that.
Now all I have to do is continue fighting for either Disability insurance for her, &/or continue badgering CMS kids. (Medically Needy affordable state-funded insurance). My conundrum is that we have insurance, albeit not fantastic insurance. Our co-pays are killing us, and this hospital stint could potentially bankrupt us. Well, I'm sure that they will accept payments, but still... on top of everything else we just don't need it.
So, peace of mind? Yes, we have faith that our baby will be back to her old self in no time. She has a long road ahead of her, more therapy, home-bound schooling, and hard work, but eventually she should be herself again. The steroids make her nice and warm so her Raynaud's isn't acting up! That's a nice side effect. I really don't want her on steroids long-term, but that is the only treatment, combined with the occasional IVIg infusion. I'll keep ya'll posted about how she is doing. It's sad; I can't believe how much my baby hurts! Gotta have faith.......
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