The one about snot

Why do you think I try to downplay Nate's stuff?  Seriously, why in the world do I automatically say his snotty nose/coughing is allergies?  Because, what if it isn't?

I am frustrated with myself right now because I may have let his snotty nose go for too long and if it ends up delaying the surgery he is scheduled for in November, I will kick myself.  I'm pretty flexible, I could probably very well kick myself.

He is ALWAYS snotty.  Always.  And he seems to have pretty horrible allergies (inherited from HIS FATHER).  And sometimes it's hard to tell when it's regular snot or not.  His upper airway is collapsed and the thinking is there is no where for normal secretions to go, so they stick around and get bacteria-y and thick.  Antibiotics don't always clear up the snot so I try to err on the side of no antibiotics, what with him being colonized with a drug resistant staph (MRSA) and having developed an allergy to one of the drugs that could help clear that up.  I want to save the drugs for the big stuff.  But as a doctor by training and not by schooling (ha!),  it's sometimes hard for me to tell what's big and what can be attributed to allergies/kennel cough from preschool/living in a house with carpet.

So here we are, 3 weeks out from surgery, Nate is coughing like a 20-year smoker, has a green nose and I'm filled with apprehension and self doubt.  I'm *hoping* it's a trach infection that can be cleared quickly because his trach smelled like stinky feet when I took him off the vent this morning (eww!).  But if it's not, maybe I will learn my lesson and stop being a pansy who doesn't like to involve the people who are paid to take care of him and, I don't know, let them take care of him.  Novel idea, eh?

In the Middle

I’m (we’re) at a very strange place in the whole Nate-has-a-myriad-of issues journey.  It’s not a bad place to be.  I’m very grateful he’s done as well as he as for so long.   The problem is, as it has been from the beginning, he doesn’t fit a mold. I believe not having a mold to fit in has gotten Nate more respect in the medical community had he had a diagnosis from day one.  I believe his doctors have had to rethink things they were taught and hopefully have become better caregivers in the process.  I believe not having a mold has let us have a more positive outlook on his prognosis.  I believe I have worried more needlessly with him not having a mold.  I believe I may have drunk a few more glasses of wine than needed in searching for a place for him (and me, as his number one worrier) to fit.  None of these are inherently bad or good.  They just are.

It’s difficult for me to put this in words but the words are clawing their way to the surface of my mind and I feel as if I need to put them down in order to gain a better perspective.  I find perspective in some strange places.  In the fog we often see on the Mountain.  In the way I react to wrong supply orders (and the dumb redneck who answers the phone at the Medical Supply Company; if there are 2 things that bother me, they are DUMB and REDNECK).  In the way Mr. A and I treat each other.   In having conversations with friends.   Every little thing can help me see the where and what and why of it all. 

I can’t function unless I can make sense of my life and world and make it all work in a peaceful way.  I end up justifying many things in looking for peace.  For example, I can justify denial as a valid way to process things.  For the most part, if it’s not conducive to a happy life to worry about something, I don’t.  I can push things to the back of my mind and let them stay there.  I think it’s more survival mechanism than anything but it’s denial all the same.  I honestly see no point in worrying about something that I can’t change, don’t have control over or shouldn’t have control over/can change.  Worrying about how long Nate will have (fill in the blank) doesn’t change the outcome.  Not to say I don’t validate any worries I do have or that I don’t worry at all, but I have become very clinical in deciding whether something is worth my time and worry.  It’s a very complex system I have, is what I’m saying. 

Now, back to that strange place.  Where does Nate fit in the whole typical vs. delayed/medically fragile vs. healthy child world?  He doesn’t fit a mold.  Several children with delays and medical issues don’t fit a mold but most of the time they have more significant delays and issues than Nate.  And as chief non-worrier about Nate, where do I go for support?  Where people understand without pitying (I hate pity!), or on the flip side where people understand without thinking I have nothing to complain about?     

Nate has a trach, which means we maintain an open airway for him.  An open airway where germs and stuff can invade his body.  He can’t clear normal secretions on his own and must be suctioned or wear a device that helps him clear the secretions.  He sleeps on a vent and gets fed through a tube in his stomach.  He’s had several surgeries and will have more.  He is delayed developmentally and goes to therapy once a week.

Okay, so he has the trach but he’s fairly healthy.  He’s constantly snotty-sick but that’s kind of normal with his issues.  He’s had multiple surgeries but he has always recovered and there will be an eventual end to the procedures.  He sleeps on a vent but hopefully, one day, won’t need it any longer.  He gets fed through a tube in his stomach… okay, on that one I have no window of light-he’s fed through a tube in his stomach.  But he doesn’t have a problem with his formula and he’s growing.  He’s delayed developmentally but to the casual bystander, not that much.  He looks and acts like a typical 3 year-old.  He goes to therapy once a week but now he only has speech every week and physical and occupational therapies once a month.  He used to see 3 therapists every week and seeing only 1 or 2 now seems so simple.

I have a wonderful support group in my friends and family.   It’s so very comforting knowing if I ever need anything, there are people I can call at any time and they will help me or find someone who can.  Mr. A, Bo, Nate and I would not have survived this without these people and I will never be able to repay the kindness we have been shown.  But they don’t understand the medical side of things, nor should they.  It’s all very confusing and if I were to say, “I’ve been wondering if Nate’s suprastomal collapse is due to the trach or his underlying hypotonia,” I don’t expect anyone to get it.   

The other group of people I wouldn’t be able to have survived this long without, my friends from the Trach Forum, aka Life Support for trach parents, they get the medical.  I don’t have to explain what suprastomal collapse is or explain that the device that helps him manage his secretions is a Passy-Muir valve or what it does.  They live this life of suctioning, doctors’ appointments, surgeries, dealing with DMEs who seemingly never get an order correct, and having a desk drawer dedicated to EoBs.  And while they are ALWAYS supportive, ALWAYS understanding, I often feel as if I shouldn’t complain to them.  Most of these people deal with so much more than I ever will.  A lot of their kids will never get rid of their trachs.  A lot of their kids are significantly delayed and will never fit in with a group of their peers.  Several of these parents will be taking care of their children when their children are adults whereas I plan to kick Nate out of the house when he’s 18 (not really, but really).   Too many of these parents will lose their children to the diseases causing their medical issues. 

I feel like I’m in some middle land of the journey with Nate.  He’s just medically fragile enough that he’s not normal and he’s just normal enough that he’s not medically fragile.  There is no mold for him and there’s no mold for us as parents.  I’m not sad or upset about this but maybe perplexed?  Intrigued? Are there other parents like us?  I know there have to be but where are they?  Should I seek them out?  Do they want to be found?  Are they like me and pretend they fit in but don’t really?

I’ve stopped blogging, in part, because of this middle land. I guess I’ve used the blog in the past to fill the space (not void) between the 2 worlds, but I don’t like the way I’ve used it.  Reading back through posts, I’ve found myself being preachy in trying to explain medical stuff and whiny in the complaining.   I sound like a total bore who needs to learn how to use punctuation!  It’s extremely embarrassing the assumptions I’ve made in thinking people want to hear about certain things and not about others.  It’s cringe-inducing to realize I’ve been so condescending in some posts, talking about how I do things and making it sound like that’s the best way.  And it’s very eye-opening to realize how much I’ve struggled when I’ve thought I’ve had it together. 

I’ve gotten off Facebook.  You know, the time-suck of a social networking tool that I spent way too much time on.  The one that made me think I was keeping up with my friends but when I think about it, how is knowing that someone is painting their toenails keeping up with them?   Maybe with my extra time I can get back to blogging and stop feeling like I’m in between 2 worlds.  I hope that I can be less preachy and more sharing.  That I can find my bearings with positive words and valid thoughts.  

What Do You Do With a Scurvy Pirate?

Make them walk the plank!  I love Backyardigans and have missed them.  We have been without cable for a year and got it back yesterday.  We will have it long enough to watch the Tour de France and World Cup then will have it disconnected, again.  Or at least that's the plan.  I see reinstalling cable as a slippery slope we may not be able to climb up again.  It's so easy to become a TV bum and it's fun to boot.  We'll see how strong we are at the end of the summer. ;)

So.  Let's see.  I went to Napa with Heather and Christy, had lots of fun, drank too much wine and paid a lot of money to ship wine home that I just found in a local liquor store.  Next time I go to Wine Country I will take the liquor store's number so I can check to make sure they don't carry what I want to ship and I will not rely on the winery rep who insists, "You'll never find that in Alabama."  Apparently we're not as backwoods as you thought we were, Napa! 

We only did what we wanted to, went to bed at 8pm CA time and woke up way too early.  It was a great trip and in spite of me being preoccupied with Tater's surgery, Heather having to prepare for a huge presentation for work and Christy having motion sickness, I think we actually enjoyed ourselves.  I'm not sure as I haven't truly caught up on sleep yet, but I think we did. 

Tater's urology surgery went well.  The doctor said it was a complicated process but it was successful and Tater will not have to wear a patch to receive hormones during puberty (you're welcome, son). 

He also had a flexible bronchoscopy while he was sedated and it was the news from that procedure which threw us for a loop.  He's had secretions in his right lung that may be the cause of his constant snottiness and quick-to-bottom-out sicknesses.  We're treating that with a 3-week course of antibiotics. 

His upper airway has also done something that can happen when it is not being used, having been circumnavigated by a trach for 2 years;  it has collapsed.  What this means for any planned trach removal (decannulation), we're not sure.  It does mean we will eventually have to get more doctors on board and I'm just conflicted about it all.  The go-to guys in this field are in Cincinnati, and I would hate being so close to THE guys and not using them.  But going to Cinci means entering a new medical system that will want to run it's own tests.  It means new doctors wanting to research Tater's underlying condition.  It is difficult to introduce a child with a chronic, undiagnosed condition to experts on this level and expect to get out with a simple, "this is when the surgery will be." 

Do we really want to go down that road again?  I flirt with wanting to find more answers about his condition all the time and continually come back to no.  We have always said if he regresses, then we will pursue answers.  Is this considered a regression or is it a side-effect?  Is there a difference?  Can I make your head spin anymore? 

I know it will all work out the way it's supposed to and I have no control over any of it but I'm still a little ticked off and not very accepting of the (seemingly) inevitable at the moment.  He will most likely still have the trach removed but it may be a little farther off than anticipated and may require a couple of surgeries.  Or he could still be on track to have it removed soon.  We don't know.  One would think we would be used to the uncertainty by now but I think if you have any amount of hope, uncertainty will always upend you. 

He's happy and I'm reminding myself that's ALL that matters.  All that matters.  Let me dwell on that a bit.  Mr. A and I are heading off this weekend for an anniversary trip.  Leeda and her boys are coming to take care of our boys and we're going to sit in a hotel all weekend and not do anything but eat and sleep.  I cannot think of anything I would rather do.