Frustration

Life in the hospital was going all peacefully, according to schedule.  THAT never happens.  I put Manny to bed on Tuesday (Feb 5) about 10pm (they'd finally done all the "messing" with him for the night).  Before 10:30 he was already having troubles breathing. 

For the next almost 2 hours, I was suctioning, repositioning, praying and trying not to let my brain get ahead of itself.  This could be a "fluke" where he is able to cough it up.  Or it could be the start of another trip to ICU.  There was no way to tell at the time. 

He was desatting, his respiratory rate went through the roof and his heart rate was almost 200.  (No fever and he was asleep.)  He's choking on post nasal drip from some unidentified viral infection.  It was blocking his airway and started sinking into his lungs.  You could hear his rattle from across the room, no need for a stethescope! I asked the nurse to call for Respiratory Therapy to come by for an extra treatment.

 So thankful to report it worked.  It cleared the airway blockage and he slept at 99-100% saturation (without supplemental oxygen) the rest of the night!  He slept so well (and so did I) that he didn't even wake up to ask to be repositioned in the middle of the night.  We slept straight from 1am-6am! He then went back to sleep from 6-7:30 when the morning tech decided it was time for us to wake up I guess. 

It's 9:30am as I type this on Wednesday and he's mostly fine.  He has a bit of a cough ... seems like it's from post nasal drip.  He now has a runny nose (clear) and gunk in his nose.  He's sneezing and coughing.  I don't feel it's enough to keep us here any longer, but I reserve the right to be right back if he starts to have respiratory complications that are beyond my home skill level. 

With that said, the blood cultures are still negative.  He's fever free.  So we have met our discharge criteria.  That means we just wait for the doctor to come discharge us. 

>>>>>>>>>>>

Now on to a new subject.  How to deal with Chronic Frustration?  There is an ongoing GI issue (details not relevant) that we have dealt with off and on since we adopted Manny.  He has had days and even weeks at a time where it wasn't an issue, but it's pretty much chronic.  And as of right now, no one has a clue the cause or how to deal with it.  Everything is just a bandaid at best.  So very, very frustrating. 

I believe this is something quite rare as I can't even find it in the literature. Or perhaps it's several things all overlapping causing multiple systems to be involved.  The mystery of it is so hard. 

On one hand, I feel like pushing and pushing for a definitive diagnosis to KNOW what we are dealing with.  With the diagnosis, there might be changes in treatment and prognosis.  But on the other hand, we could chase the diagnosis and never find it.  Or we could find it and it NOT change the treatment/prognosis.  Would that be for naught?  And I find myself vascilating between those two competing thoughts. 

I've actually been TOLD things like, "How hard are we going to work for a child with a terminal condition?" and "Why does it matter?" 

Well ... what if it DOES? (sigh)

OK so lets say we do decide to pursue the diagnosis. Where to start?  The whole thing is just so complex that it's kinda overwhelming. 

Now, with all this said, we're told that NONE of it has anything to do with his underlying Muscular Dystrophy.  So not only does he have this extremely rare and not understood" terminal" condition ... he has a condition that NOone seems to know what it is or how to handle it.  And ironically, if we don't figure it out, it's MUCH more likely that THIS is what will take his life and not the Muscular Dystrophy. 

So I'm frustrated. 

My pediatrician has been working with me to find a solution for part of this issue.  (She's been our kids' doctor for 12 years!)  She made arrangements for me to see a specialist in Orlando. It will be almost 2 hours one way to get there but if they can help, it will be well worth it.  I'm supposed to call as soon as we're discharged and they can get us in within 24/48 hours.  Hmmm.  By comparison, I called for the next available appointment for the same type of doctor locally and they gave us 6 weeks quote.  And we're an established patient with them. 

Hopefully that means this is an indicator that they understand the gravity of the situation. 

By making this appointment, however, they need our medical records from the last doctor.  This will alert them that I am not quite happy and am looking for another opinion.  I have a feeling this will be a problem for us.  I imagine they will ask us to no longer be patients with them.  I hope not, but it's entirely possible.  And if they do, it's likely to cause a domino effect.  It's a bell you can't unring.  And the new group might not even be able to help us. 

So I'm anxious. 

But at the same time, it's possible they CAN help.  It's possible I can start to be the Mom again in this specific area and not be managing medical pieces of his care that I have no business doing.  I would LOVE to turn over this part to a qualified doctor. 

I know some of this is purposely vague.  I have friends at the hospital who now read this blog! I'm at this hospital way too often to burn my proverbial bridges.  (For perspective, we've been admitted 18 times in the past 15 months.)  So I'm sure people can read between the lines, but I'm trying to be diplomatic at the same time the way I share this with anyone who might be reading this. 

Which leads to the next topic: When diplomacy is over rated.  I wholeheartedly believe in the more flies with honey than vinegar principle.  I can tell you 1000 stories of how it's worked.  I can only count a handful of times I wish I'd been more forceful. 

Advice is often given to moms of chronic kids for us to get loud and forceful and don't worry about being a B*tch and they tell stories about how they did and the results they got.  But that sentence is almost always followed by something like, "Because I know I'll never see these people again." 

See the problem with that sentence??  Remember how I just said that he's been here 18 times in the last 15 months?  Often for weeks at a time?  Uh, ... I WILL see these people again.  I WILL need their help again.  I NEED them to work with me.  And so I believe diplomacy is the best way to handle it. 

And yet ... I think there are times when enough is enough.  And there are several people who this admission who have noted there is some "frustration behind my smile".  More and more doctors are asking the obvious question of "Why isn't Dr. X doing something about this?"  They see there is one glaring hole in our care, even without me pointing it out. They are frustrated FOR me and then they are frustrated by running into the same immovable object I keep hitting. 

So diplomacy might just have to take a back seat until I can get this straightened out.  And that solution can come in several forms.  Will be interesting to see how this unfolds. 

The one thing I DO know ... things can't stay status quo.  Manny's health is suffering with status quo.

UPDATE:  4pm ... Discharged!  Now we just have to keep him breathing well at night.