Assumptions

I am sick of bugs!!  We all got over the flu, which thankfully Hudson did not get, but he has gotten everything else since!  He's had a bout with a gi bug, I really think it was Rotavirus, but didn't go to get it cultured.  Poop everywhere, but at least we've been able to keep him hydrated at home.  Now he's got some sort of respiratory infection, is on antibiotics, and that is causing, yes...more poop.  He really seems to be catching so many bugs lately.  Something to keep in mind for his immunolgy visit soon I guess.

We haven't gone back for any more tests related to the left sided weakness episode.  I think a lot of what his mito doctor said to the residents while she was interpreting the tests out of town got lost in translation.  Dr. K and I emailed back and forth on the Monday after Hudson was discharged, and basically it came down to the fact that what happened to him doesn't fit into a neat little box.  It looked like a stroke, but his MRI was clear, the EEG was abnormal, but the fact that the weakness persisted bothered her from a seizure perspective.  So her plan is to monitor him for a month, and if the weakness persists or gets worse, we are going to do a 24 hr. EEG, spinal MRI, and spinal tap.  About a week and a half after the episode, the weakness went away!  This is wonderful news, but leaves us wondering if it will happen again, or if we are still going to perform the additional tests.  More questions for Dr. K at our next appointment.

In other news, something happened yesterday that I feel I need to address.  Our DME, the place where we get Hudson's feeding and oxygen supplies, notified me that they had been informed by someone that Hudson didn't have a G-tube anymore.  They questioned what I had been doing with the past formula and feeding pump supplies we've been receiving, because if he doesn't have a tube, that stuff isn't covered.  It could have easily been an insurance nightmare, but in the end I went up to the DME and showed them that yes, he does in fact still have his tube in.  This situation upset me, a lot.

The reason I didn't start a blog a long time ago was because I was hesitant to put our family and Hudson's issues out there, for everyone to read about.  Ultimately I decided that other blogs have been helpful for me to read, to know what other mito kids are going through, and if our story could help someone along the way, that would be a good thing.  This blog is very honest, and always will be, and it's a good way for me to chronicle things that happen to Hudson.  I do not however, write about everything related to Hudson's care, and I think it's because some of it is so second nature to me now, and partly because sometimes I just don't feel like laying out all of his issues for everyone to see just yet.  Sometimes I need time to digest certain aspects of his medical care.

Do you know that Hudson takes almost 30 doses of medicine a day, and that's on a good day?  He's hooked up to an extension for a lot of the day to relieve the intense pressure in his stomach that causes uncontrollable retching.  He receives a continuous drip of formula all night long because his body can't grow without it, and he is hooked up to a cannula all night so when his body forgets to breathe, he's still getting oxygen.  He has a heart condition that could cause it to just stop, at any second.  He has something wrong with virtually every organ system in his body.  We and his doctors work very very hard to keep him at a good baseline, in fact, when someone tells us how good he looks, it's a testament to how very hard we all work to keep Hudson's body functioning.  It's easy to see him drinking a bottle and assume he's eating exclusively by mouth and that he's doing great and that his tube is gone, but the reality is that what he consumes by bottle wouldn't sustain him for a week, and the tube that hides under his shirt is his lifeline.  We hook him up when he goes to bed, and it sustains him when he is sick and his gi system shuts down.  It is easy to make assumptions about a mito kid, sometimes they do look good, but mito works from the inside, and you can't see the havoc it's creating inside their little bodies.

So I guess this all leads to my point, which is that it's easy to make assumptions, but without all the facts, a very sticky situation can be created.  I am guilty of this too, but Hudson has really taught me to stop and think before I make careless assumptions.  People have sometimes made comments about a nearly 4 year old still drinking out of a bottle, but it's easy to make assumptions when you don't know the whole story.  What they don't know is that the bottle is his only source of oral intake, and I just refuse to exclusively tube feed him if he'll still take the bottle!

So I'll keep writing and putting our family experiences out there, because I do enjoy it and I do feel it's helpful for other mito families to read about other mito experiences.  I know that the people who read this blog love Hudson and care about him, and to all of you wonderful people, thank you.