Monday, April 11, 2011

Out of Control

I was surprised that the clinic actually called us back on Friday. They were concerned with the radiology readings of the belly scan, and concerned it wouldn't be until the end of June to get our son seen with the new GI doctor. Because they aren't the primary care doctor, they aren't able to call for us, but they suggested strongly that we ask our pediatrician to work to get him in sooner. We have increased miralax, been giving fiber gummies (found at Costco for anyone wondering) and hopefully we'll keep the vomiting episodes down with that combination. If not, we can try a prescription of Zofran to see if that helps. It isn't perfect, but we're starting to have a little improvement.

I'll message our doctor and see what he wants to do, or can do. The doctor we are trying to see is only in clinic on Wednesday afternoons. So not only once a week, but only for half a day once a week. Our care manager was pleased to hear we had an appointment with this particular doc, and he comes highly recommended by other parents and our pediatrician. We've been seeing a GI doc, but it just feels like we go in circles there. I like him, but I just am not feeling like it's the right place for us to be with things escalating like this.

A hard thing to do is juggle the needs of your child, but I'm finding it more of a struggle because there is more than one child having trouble. My youngest had double ear infections and was very lethargic with that illness, and was not doing well until about the 4th day on antibiotics. Her heart rate was twice as fast as normal during that time (160-200 while sleeping). Her heart rate is still about 30bpm faster than before, and she's having a lot of trouble at night with constant reflux, and resulting breathing stuff (since we've had similar things with an older child, I assume this is all just reactive airway).

I have another child who I've been concerned about with some behaviors that we can't seem to manage well, and her posture is getting more and more into an "S" shape, along with increasing tiredness. She's the one that has periodic swelling around her eyes where we have to give her Benadryl. She is also quite thin, and has had lots of "quirks" in life. We seriously considered doing a Nissen on her, because her pH probe results were so severe. We consulted a few doctors, all encouraging us to do it (we were told it would be neglectful not to), but one doc said he felt since she wasn't aspirating, it wouldn't be wrong for us to not do it. We decided to take the devil we know with terrible reflux over the devil we don't. The surgery wouldn't have reduced her amounts of medication, and without aspirating, it seemed better not to go through with surgery. Sometimes I wonder if we made the right decision, but almost five years later, she still isn't getting pneumonias, though her reflux isn't really improved either.

I sometimes think it would have been better to have lived a hundred years ago. There weren't as many medical options to have to decide whether or not to use. It makes me sad to think that Dominic and Bridget may have died simply because I wasn't aggressive enough with medical treatments. Now, I know that I was doing all that would have been reasonably expected (even more, actually). I was very diligent about taking them to the pediatrician repeatedly, and doing everything that I was instructed to do. But sometimes I hear other parents talk about their children getting through medical difficulties without succumbing because they followed their instinct and wouldn't relent until doctors took them seriously enough. It just makes me nervous that I didn't do enough for them, so now, am I doing enough for these other kids?

And when there is more than one child who is struggling, where is the priority? Do you live your entire life living in medical facilities, trying to find the doctor who is going to tell you what you want to hear (but maybe you don't want to hear), but in the end not even being able to change the reality of the medical situation? Or if you do live your life going through every medical avenue possible, maybe you will change things and get more time in life - but is that the way to live your life, no matter how short or long it is?

Not having a clear diagnosis for what is underlying in my family does make me 2nd guess a whole lot more. I wish I could know if all the different things each child is dealing with is connected to the same underlying cause, or if they are all different. How aggressively do we get with trying to find answers, treatments, and relief? How much money do we spend, or time? Will all that investment result in anything improving?

I have my own set of difficulties. Things are so complex, and even the specialists aren't sure what to say about it. The insurance we're on doesn't have a neuro-geneticist who works with adults, but that is supposedly the specialist for me to see. They're working on getting a special exception. In the meantime, I was told to gather records, and it's been a lot of things brought back up. The autopsies of both the kids, the multiple visits to so many clinics and doctors and hospitals, with so many tests and procedures. I wonder if it's possible for them to take time and comb through it all to even get a clear answer. And then I wonder if it isn't all just a red-herring, to think that somehow it's all connected, but maybe it's not?

I read a blog of a mother who has lost a child. She is pregnant with another child, and it was discovered there are some concerns with the baby's heart. I read her post and admired her peace with it, and her resolve and insight. She wrote, "I will be okay. I will not sit up in the wee hours of the morning. Google search after Google search. Getting educated. Trying to gain some control. When I have none." It made me reflect on the long nights I've spent typing in symptoms, hoping to find a common thread to lead me to some suggestion of a diagnosis. I thought of all the medical papers I've read, some just abstracts because I did't have access to the full site, and how I didn't even know what so many of the words really meant, but I thought for sure that something in that paper would give me answers if I just knew how to interpret it. How many times I've read and re-read the doctors notes and lab and test results, looking for something that would clearly identify what it is that claimed two of my children, and may be the root of so many other struggles for the rest of us. But her words felt like a gentle rebuke for all the effort I have made, in vain. "Trying to gain some control. When I have none."

Truly. I have none. No matter how hard I've tried to help our kids, or myself, I was powerless to save Dominic and Bridget. I can't say it is because of all the various medical this or that we have done that has kept my other kids alive. I don't know that my own health is improved any from all the testing and procedures and medications that have come my way. I have no control. That is what is emphasized in uncertainty, that makes me yearn for the certainty - as if having a diagnosis would give me control.

I don't want to make it seem I am so ignorant and naive to believe I'd gain control, fully, with a diagnosis. I do think, though, there is power in knowing what you are facing. And by naming, we have power. You can make more clear decisions about how much intervention is too much. If it's better to just live life free of the medicines and tests and visits to this or that medical facility, and fill your life with the things you enjoy (because truly, who really likes being at doctor appointments, hospitals, clinics, labs, etc.).

But ultimately, I have no control.

So I'll try to navigate through the best I know how. Feeling inadequate. Second-guessing. And absolutely hoping, that the One who is in control will be gentle with us.

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