Friday, May 27, 2011

This, That and Whatever It Is

As far as doctor visits go, pulmonology was a great visit. We discontinued the oxygen compressor at night, so I've called to have them come and pick that up. I was surprised when my husband asked what we would do if we needed it again. He was always critical of having it in the first place, and even questioned a few times if we even needed it, so I was surprised by the question, but the doc just said she could order it and have it sent out immediately if it came to that point again. So I am very excited to not need to worry about this. Honestly, I haven't been worried about it for a few months, anyway. But I was worried that the doctor would disapprove. I don't know why that concerned me, but it did, so it was a relief to feel like my feelings were consistent with the doctor's.

I just have to say this doctor is the doctor that gives me hope at all in the medical community. Completely opposite of how I felt leaving the last appointment with GI, I felt like this doctor not only took the time to listen to my concerns and thoughts, but also had taken time to review records, and made observations of her own. It was nice to feel like there really is a doctor who cares, even though she also tells us that there isn't anything to clearly tell us what is going on.

Even though we didn't feel we needed the oxygen anymore, we have been very concerned about shallow breathing episodes. Both Dominic and Bridget would breathe weird like this. And it has really freaked me out, to be honest. But we never had the pulse oximeter with Dominic or Bridget. We have with our youngest, so we were able to see that even if she was breathing very shallow, she would keep her sats up. They would drop from her normal, but only a couple of percentage and still typically in the 90s. So though it freaks me out, I was okay to wait to talk with the pulmonologist about this.

Another thing that is new is since the end of February, she has just had a constant cough. It mostly gets worse at night. It was really bad for about a month and half, but the last month and half it is improved. But still there every day, and still will wake her some at night. It is a raspy kind of cough. She hasn't been ill. But she has had more audible reflux, and I believe that is what has caused the cough. We have an older child who had this same cycle start (although she was a little younger when it started). We didn't know what was going on, and it took about a year and half to finally figure out it was reactive airway disease - by this point quite progressed. So I was worried about what to do to make sure it doesn't get that bad with our youngest.

We talked a lot about many other concerns, not directly related to the respiratory questions. We looked back at some previous testing. Then we got a plan. The doc increased her dose of prevacid, and we'll see if that will help improve the cough problem. The shallow breathing was a concern. She said typically it is something she'll see if someone has lung disease, and we are not concerned that we're dealing with lung disease. Even if we were, the shallow breathing is intermittent, unpredictable as to when it will occur (lung disease would mean it would be constant). The doc said that she does see the funky breathing stuff with Leigh's encephalopathy.

Now, it surprised me to hear her say that. We still do not know if mito is part of our family picture, but Bridget's autopsy lists a diagnosis of Leigh's or Leigh-like syndrome, based on brain pathology. I don't understand if our youngest could have the same thing or not, because she is doing pretty good overall - but has these quirks.

But we have an appointment with neurology next month. So the pulmonologist feels he will likely want to do a repeat EEG. And if so, he may also combine it with a sleep study. The pulm wants to do a blood gas to see if the shallow breathing is resulting in CO2 problems (I don't really understand this, just trying to remember what the doc said). So if neurology wants to do labs, we can do it with those labs. Otherwise, she gave us the order to have that run.

She also wondered about Dysautonomia. When we were there, she asked us if we had noticed what she was observing with her pupils not dilating. Actually, we have and it is even more pronounced in her brother we are worried about. We thought it was weird, but the kids don't seem to be bothered by it. Anyway, I think that is when she also talked about Dysautonomia. Well, I had listened to a lecture by Dr. Boles about this topic and how it relates to mito. And after listening, I felt it was amazing how it seemed to hit on a lot of the struggles our family has. Well, she feels it would be a good idea to do a holter monitor for 48hours. She thinks that perhaps the shallow breathing or some of the other things could be explained by that test, so we're going to do that. She'll have to order it, but we just do it at home and send it back.

I just really do like this doctor. I like that she's cautious, and tries to avoid tests if they are unnecessary. I like her insights about how some tests aren't even as helpful because just the testing itself is a physiological stress, so it makes the results unreliable sometimes. I like that she is okay with my reluctance to be too invasive. But she also really took the time to look at the whole picture - not just the respiratory issues - and observe, and look through records, and help on the individual level instead of being prepared with a pre-printed planned protocol. She seems to be thorough enough that even with my reluctance to do too much, that we aren't really overlooking important things, either.

So pulmonology was a good one.

A follow-up on GI:
We did do the whole flush out. Things went through, so I guess it was successful in that way. But we have had a few vomiting episodes since, poor appetite is still the same, and we are still needing to use the miralax. We increased to a whole capful instead of 1/2, and that seems to be working better. I don't see any improvement, and I am no less concerned about my son now than I was before going to GI. We will be going back in about five weeks, and I hope this time there will be less frustration and more insight on how to help.

Now some introspection:
I have had some real moments of clarity lately about how much I wish I didn't have kids who had struggles, and so sometimes I just go on with life as if nothing is wrong. But there are things that are presenting that just make it clear that whether I like it or not, there is something different about my kids. I hope nothing life-threatening. But we still don't know what is underlying. And that part scares me too much.

I think my biggest struggle right now is trying to determine how much or how little to do for my kids medically. I don't want to overlook things and push them to do more than they should do, and have it impact their health negatively. But I also don't want to assume they have a condition that we would find out later they do not, and therefore hinder their progress with restrictions that were unnecessary.

I fear most the regret of not doing enough, and having them die. I have buried two children! I can't express the heartache of this! But I keep telling myself that there is also a terrible regret in not letting them live! So what do I do?

When I got a call today from the metabolic clinic, I was surprised. It was to ask if our information could be shared with another family in the area who wanted to do a fundraiser for mitochondrial disease. Well, it made me wonder. This clinic has not given us a definite diagnosis of mito, but it keeps coming back to that as the explanation for our kids' deaths and even as the underlying reason for the current health struggles in our family. In a way, having them call me to ask this made me feel like they had put us in the "mito community." It felt like I was given permission to accept this as the diagnosis. And yet, in the "mito community" I feel like people think we are imposing - that we don't know what it's really like to have a kid with mito, and we don't really have a diagnosis, and we somehow just want to intrude on their territory for whatever sick reason someone would actually want to be in that community.

I also feel that way generally, with the medical community. They don't know what it is for sure, and our kids who died were infants while the rest of us are older, and none of us have seemingly urgent medical concerns. So as I've noted before, it might be mito, but it might be nothing. Nothing of serious consequence, that is, because there is something. And maybe it is mito for the kids who died, but an unfortunate mix of all sorts of other health issues for the rest of us.

There are other moms who have kids with a confirmed diagnosis, and they tell me to just accept that Dominic and Bridget died from Leigh's and have everyone involved in the care of our family plan our medical care based on the diagnosis of mito. But I have a problem doing that because you can't just give yourself a diagnosis. That's why the doctors go to medical school so that they get the final say. And you can believe what is wrong is this, but find out later it was that - and that treatment would be very much different than this. I am just cautious.

I am also one who has been very invested in natural. This sounds weird. I really appreciate modern medicine, and I am not wholistic exactly. I just am not sure I like the idea of rushing into medical "interventions." It seems to me, one "intervention" leads to another and leads to another.... until you have handed over your health to reliance on medical interventions.

I hear about some kids whose health is very similar to what mine was as a child, and the recommendations doctors are giving now in response to the situation. I wonder how I would feel if my mother had taken advice like that and put me through some of what parents are doing for their child because they are also scared like I am. Somehow, without all the medical technologies, I grew up despite having whatever it is that caused all that and is progressively causing much more. I can't say if my life would be improved or worse if my mom had had access to the kind of options we have access to now. I just feel more reluctant to run to the medical answers - or cynically, the protocol - when I have more trust in my own body to adapt or adjust somehow, than I have trust in people who simply are there because they went to medical school. It seems odd to me that strangers, people who see you for an hour at a time, here and there, but not constantly - that these strangers are trusted more than we trust our own selves.

Trust is hard for me. Because I tried trusting myself, and had two kids die. I tried trusting doctors and had two kids die. I also have six living kids, and I'm still alive. And somehow I really deep down believe that we are all just human. Death is natural. Not necessarily, in my very unhumble opinion, death of children, but truly it is just a reality that as miraculous as life is, it is also finite. As much as I wish I could have answers, I am not getting them. And as much as I want to trust myself or doctors, we have all failed. So the best I can do is just work from where we are.

Hopefully, I can find a place where I feel there is support through this struggle. Whatever the diagnosis or medical plan, whatever the ultimate outcome. I just hope to find a place where I am not marginalized for trying to do the best I know how for our kids, work through as I still grieve for the deaths of my children, and find a way to focus with all that my own mind and body are struggling with also.

And now I'll end my typical long ramble.


  1. Thanks for your continued support to the mito community!

    Sara Eaton
    "never Give Up"

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