Anybody have a punching bag?

Ugh. This effing day.
I thought Fridays were good days
not so much this week

I just want to SCREAM. And why won't Typepad let me change my font size right now? I want to SCREAM LOUDLY.

I don't even know where to start.

Isaac is sick; the wee-er one is flipping out today – just total meltdown mode; the nurse that came this morning was more stressful than helpful; Cipro comes in tiny tiny balls that get everywhere on the trach ties; the Cinci people can't fit Ike in until September for even just the preliminary tests; the trach clinic people in Austin can't see him until July. NO ONE IS MAKING ANY ATTEMPT TO HELP US.

We are just floundering in a sea of fuck-yous right now. It's as if the medical establishment WANTS Ike to get sicker before they will help. They WANT him to have a g-tube. They WANT him to get sick every fucking month. They WANT things to get worse. Why? Why is that? Why doesn't anyone understand that WE HAVE TO GET THE TRACH OUT OF HIM? Why am I the only one willing to believe that things can get better and get fixed quickly? Why is no one else as impatient as we are? Why does no one else seem to see the vicious cycle of what's happening here? Ike needs the trach to breathe – but the trach makes it harder for him to eat and grow and develop – but he needs to eat and grow and develop to get the trach out. The health issues he has other than the stenosis, are being CAUSED BY THE EFFING TRACH.

We are taking a baby with healthy lungs, healthy eating habits, normal development and a happy disposition and clusterfucking that all to hell right now. Sure he needs the trach to breathe. Obviously, I want him to have the trach to breathe. But if there are a battery of tests to be done to determine which surgical procedure he needs to remove the trach, waiting until September seems like we are just dooming the healthy lung, healthy eating, normal development trifecta we had before all of this.

The longer the trach is in, the more often he gets sick. And it's not regular sick, it's BAD sick sometimes. The longer the trach is in, the more likely he is to aspirate and hurt his lungs. The more likely he is to aspirate, the more likely the doctors will want to do the g-button. The more likely they are to do the g-button, the more likely it is for him to have oral aversions that last for years. The longer the trach is in, the more likely his development will continue to be delayed, even with aggressive interventions.

The trach is our best friend and our worst enemy.

And no one seems willing to accept that other than us.

I'm tired of being the family people feel sorry for. I'm tired of specialists who want us to accept the status quo. I want to fucking get on a plane and fly somewhere, anywhere with trained, notable physicians who are not stymied and confused by Ike. And I don't want to have to wait FOUR MONTHS to do it. ARGH.

In other news, the wee-er one slammed herself into the corner of a wall today, producing a goose egg the size of her fist. She refused all ice, preferring instead to scream.

In further news, our insurance wants to cap our nursing visits. No more nurses. We've been told not to worry about it. With the MDCP kicking in sometime soon, and the corporate headquarters of the nursing company fighting on our behalf, we should be OK. I hope so. But then again, if we keep getting nurses who are flustered, inexperienced with trachs, and need as much supervision as Ike does, then I don't know what we'll do.

I somehow know exactly what I want to do about things and yet nothing about what I can do for everything.

Is the answer to be patient? Stick with Cinci? They know best? Or do we branch out into the uncharted territories? The new doctors with smaller, but successful track records in other parts of the country? I'm tired of Ike being the trach baby everyone experiments on and uses as a learning tool. And yet, if he's just going to be another cog in a surgical wheel, I surely don't want that either.

It is incredibly fucking frustrating. All of it.

All.

Of.

It.

I would punch a wall, but I need a non-broken hand to suction my trach baby. My trach baby no one seems interested in fixing.

*** eta ***

When I say no one is trying to help us, I don't mean you guys. Our community, friends, family, are helping us more than you can know. You are a tremendous blessing for our family. This is just a whiny "woe is me" post about the system and the lack of local resources and how much it all sucks.

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11 thoughts on “Anybody have a punching bag?

  1. That would all make me infuckingsane. If there are doctors that can help you in north Texas our home is open to you. We will happily make germ free accomodations for you and yours. And as a bonus, we do in fact have a punching bag.

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  2. We do not have a punching bag, but ditto.
    I am going to say look into the other doctors and hospitals. If nothing but to see. You could still say no and wait for Cinci.
    Besides that, me and the TC are ready to kick some ass for you if you need it.

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  3. I would give you all the punching bags in the world if I thought it would get that trach out. If I didn’t have twins at home who drive me nuts, I would offer you my NICU nursing experience every night. *hugs* You are the strongest mama I know and you WILL get through this.

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  4. I am so sorry for everything you havre to go thru. I cannot even imagine. I am an impatient person just like you. I would call EVERY SINGLE DAY!! There has to be a cancelation or they have to get sick of you and give you an appointment sooner. Good luck!

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  5. you probably know enough now about ike’s condition to be able to do your research and apply what is said about SGS to ike. maybe knowing what to expect would help. there are a TONNE of journal articles out there that will tell you everything you want to know about reconstructive surgery and when it can be done.

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  6. If you find that Children’s Hospital in Pgh, Pa has what you need, there’s a place for you here. I’ve been a blog fan since BI (before Ike)

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  7. Try asking your dr in Austin to call directly to other drs. Physician to physician calls get in A LOT quicker in my office than when the pt calls for an appt the regular way.

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