Bye, Mudder

My grandmother died this morning.

The weird thing is that I'm pretty sure I saw her in my bathroom last night. It was 4:45am and I tend to hallucinate when I'm exhausted. But I saw something out of the corner of my eye when I was brushing my teeth. A flutter, a gauzy flash reflected behind me in the mirror. And I thought of her.

Then, this morning I got the call.

I was very briefly trying to figure out a way to go to the funeral. Get a nurse for a whole day and maybe leave early morning and come back that night. Maybe bring the wee one to see his cousins for the day.

But it's all impossible. Too much money, no nurses.
No time. And what if something happened with Ike-a-saurus while I was gone?

This is the only funeral of all my grandparents that I will have missed. I guess that's because I'm old now and have my own problems – a testament to her for living so long!

We love you, Mudder. We miss you. Go dawgs.

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.




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.

50 actual ways to make your baby smarter

1. Stop covering his face with Target bags

2. Open the garage door BEFORE turning on the minivan

3. Just say no to fumeless oven cleaner

4. Turn the TV on louder so he can actually hear it

5. Get him an iPhone

6. Wash his hands after he plays with the mercury from the thermometer

7. Wait until he's at least 1 to sign him up for contact sports

8. One word: Potty tutor. Shit. That's two words.

9. Ignore him in Spanish

10. Fortify sandbox, boogers, rocks and driveway worms with vitamins

11. Quiz him with flashcards of quotes from The Simpsons

12. Listen to everything Barney says

13. Stop keeping his pacifiers in electrical outlets

14. When you drop him, drop him on the side of his head

15. Avoid giving him a mustache with a Sharpie

16. Understand that a Superfund site is different than a super fun site

17. Remove the minibar from the nursery

18. Only one hour of Springer a day

19. Only natural sodas for his bottle

20. Stop confusing Baby Einstein with Young Einstein

21. Realize Twitter is no substitute for a nanny

22. Note that special brownies do not come in child-sized portions

23. Name him something like Breville or Trout

Shit. That's only 23. Anyone want to help? I know we can make it to 50!

If my day was on NASA TV

ME: *shpsh* 
I'm, uh, grabbing this size 2 pamper here, over. *shpsh*

HUBS:  *shpsh* Do you have *shpsh* the wipes? *shpsh*

ME: *shpsh* Over on my left hand side *shpsh* I see them *shpsh*

NARRATOR: Kari is attempting to, uh, grab the diaper from her right side while simultaneously holding down a squirming child and protecting her face.

ME: *shpsh* gonna have to skip steps 6-8 *shpsh* Move straight to clean up *shpsh*

HUBS: Can I bring you a towel? *shpsh*

ME: *shpsh* And *shpsh* sanitizer please. *shpsh*

NARRATOR: A slight complication in the mission, as the child has both peed on his mother's arm and turned over on the changing table, attempting escape.

HUBS: *shpsh* I agree with your plan *shpsh* sanitizer ready. *shpsh* Good luck.

ME: *shpsh* diaper is *shpsh* successfully *shpsh* on.

HUBS: *shpsh* Ready to move *shpsh* on to trach care *shpsh*

ME: Let's do it. *shpsh*

NARRATOR: With the diaper successfully secured, the parentalnauts will attempt the tricky manuever of cleaning child's neck, replacing trach ties and polymem dressing, without dislodging trach.

HUBS: *shpsh* can you please hold *shpsh* the trach down *shpsh* while I remove the ties? *shpsh*

ME: Affirmative. *shpsh*

HUBS: *shpsh* One side down, one to go. *shpsh*

ME: Do you have *shpsh* the Nystatin powder? *shpsh*

HUBS: *shpsh* already applied to *shpsh* the new *shpsh* ties. *shpsh*

ME: Perfect. Nice job. *shpsh*

HUBS: *shpsh* Peroxide mixture handy? *shpsh*

NARRATOR: The clean-up activity continues, as the child's neck area is swabbed with a 50/50 mixture of hydrogen peroxide and sterile water and then swabbed again with just water.

ME: *shpsh* too much torque on the polymem. *shpsh* I think it will be fine with this tear, though. *shpsh*

HUBS: *shpsh* should be fine. *shpsh*

ME: New ties *shpsh* ready to *shpsh* be applied. *shpsh*

HUBS: *shpsh* copy. *shpsh* Do you have the paci? *shpsh*

ME: He won't take it *shpsh* he's too angry. *shpsh*

NARRATOR: The mission becomes precarious as the child is angered by the changing of the trach ties. His arms break loose from the swaddling, threatening the success of the mission.

HUBS: *shpsh* Is there a glow *shpsh* worm handy? *shpsh* Anything? *shpsh*

ME: *shpsh* I can *shpsh* flash my *shpsh* boobs.

HUBS: Win for *shpsh* both of *shpsh* us. [pause] *shpsh* trach ties secured.

ME: *shpsh* final tie tightening *shpsh* done. *shpsh* Mission complete. *shpsh*

NARRATOR: The child's trach care has now been completed. There will now be an attempt at feeding. At 2:12pm central time, the crew will attempt to administer 1ml oral Cipro to child. Surely, an arduous, yet historic event.


Strike one, strike two

some days are better
sun shines, kids play, birdies sing
then some days sucks hard

Guess what? The baby sandwich from yesterday? THEY DID IT WRONG.


So now we have to go back and do it again. And stay at the hospital for SIX HOURS.

As the wee-er one says when she gets mad: I will squish you like a bug! I will poop on your head!

Seriously. Someone needs a sharp poke in the eye for this. Baby torture is not cool. Especially irradiated baby torture. I mean, this kid has already had about 16 million regular x-rays. Now we're adding the fancy stuff to it. His little thyroid has to be all, "WTF, you guys? Cut it OUT."


In other news, Ike-a-saurus is sick. It snuck up out of nowhere this afternoon. Ever seen a green loogie come shooting out of a trach? I recommend not standing directly in front of it.

In the span of just a few hours, we've gone from happy, smiley, all's cool, to quadrupled Albuterol treatments, doubled Pulmicort, and Cipro twice a day. Man.

Fucking baby sandwich. I blame YOU. God only know what bug he picked up. I'm so excited we get to go pick up a trach full of new bugs when we go back.

No ass money yet

red sparkly tummy
emanating from Isaac
wee baby sandwich

Today was the nuclear milk scan!

"I just put some gamma rays into his milk. Can you make sure he drinks it all quickly?" This is what the nuclear tech (Nucleist? Nucleographer?) said, handing over Ike-a-saurus' bottle.

I admit to be being very excited about the science behind this study. I wasn't thrilled to have to starve the wee man this morning, and then feed him radiation, and then strap him into a sarcophagus-type papoose thing, and sandwich him in between giant flat-iron-shaped hunks of machinery. But I WAS excited to hear all about gamma rays and the crystals in the machine that read the rays. I was excited to watch the red sparkles on the screen indicating Ike's tummy and bowel as the food moved through his system.

Cool science, though the experience itself was not super fun for anyone.

At one point, the tech had to hold a glass tube just under Ike's neck, so the machine could pick up the tube's "marker" and give some scale to the images on the screen. When the tech pulled the tube out of a fancy, probably leaded, container I was like, "Wow. I wish I had a Geiger counter." This earned me some funny looks. But then, when the guy dropped the glass tube on the floor and I yelled, "Yay! It's the radioactive laboratory accident that will turn us all into superheroes!" I got even funnier looks.

I guess when you play with gamma rays everyday they lose their appeal.

Anyway, we were hoping the test would give Ike the super power of shooting money out of his ass. So far, it's given him gas, but there's no sign of any money. Not even rubles or pesos.

He was (obviously) not a fan of the sarcophagus, but with the help of the (non-nuclear) glow worm, some Sweet Ease, and some very tight velcro straps, he managed to righteously suffer through the hour plus of having to have the gigantic flat-iron machine hunks mere inches from his face and booty.

Now we wait to hear from the doc to see if the test showed any indication Ike-a-saurus is aspirating his reflux. This would be a bad thing. Like finding out your mutation is of the giant-lame-feathery-wings variety. Except maybe worse. Because at least with giant lame wings you don't get pneumonia from your stomach juices.

I digress.

Takeaways from today:

1. Gamma rays, win.
2. Laboratory accidents that may or may not give you super powers, win.
3. Making a baby sandwich out of a giant flat iron, fail.
4. Suctioning said baby's trach with mere centimeters of clearance between said flat iron, fail.
5. Repeatedly saying "la-BOR-ah-tory" instead of "lab-rah-tory", win.
6. Starving baby, fail.
7. Watching tech freak out as gamma rays drip onto artificial nose, win.
8. Hearing story about kid who's stomach took 20 hours to empty, fail.
9. Learning that "eco-conscious" lighting effs up gamma ray machine's remote control, win.
10. Radioactive poop, fail.


The sacrifices we make

a replicator
probably makes better food
than this thing right here

In possibly the biggest sacrifice I have ever made for one of my children, I am eating a Tofutti dairy free "ice cream" sandwich.

If you took the ocean and made ice cream out of it, it might taste like this.

Double electric pumping for almost nine months… unrecognizable nipples… blisters… pain… supply issues… mastitis… all of that didn't make me stop pumping.

Tofutti "ice cream" sandwiches… might just break this camel's back.