So... I just started an IV on my 3 year old

[presence]

gimme a chance to edit... I'll flesh this out as I quit shaking.





I need a virtual hug for sure.





My kid has severe hemophilia. Most of you guys here at rpf probably already know that. We usually run to the ER for these things. That paradigm sucks on a lot of levels... but that's protocol.

I'm outside cleaning the chimney... we're expecting 8" of snow at an inch an hour... and its beginning to bear down on us. Roads are already nasty; I'm 45 minutes to help on a good day.


I've been practising on my wife quite a bit lately... "mommy you're daddy's pin cushion"


relative to the backs of her hands... the kids veins are still tiny though.


By chance those OXY-ISO glasses that help to find veins (and correct red green color blindness) arrived in the mail today.


So I come in from cleaning the chimney and the boy is holding his ankle.


Shit. You've gotta be kidding me.


What's wrong little man?

Its owey in there.

nice.

did the dog scratch you?
a splinter?
did you step on something?


Tell me anything...


No dad its a bleed.

Jesus H.

blizzardin'




The mrs. looked at me and said she'd prefer I give it a go over taking a chance on un-plowed country roads.

shakin'


Well folks... did what needed to be done.

stuck 'em; perfect shot.

then before I'm about to squeeze the meds in... the needle backs out. Failure to tape down.

grrr.

teeth chatterin'



$2000 of meds mixed and in hand... trash if I don't use them NOW.


Other arm..

stuck 'em; perfect shot.

slowly over a minute...

meds in.

call it done.




Time for a glass of wine.


Kid is on ice watchin' curious george count stars.


I'll update the op as I chill out.


I love ya kid.



health freedom,

presence

 

[sailingaway]

*hug*

Wow.

 

[heavenlyboy34]

 

[RockEnds]

 

[Kotin]

I respect any parent who is dedicated to their kids.. I see far too many kids raising kids, selfishly.. and my parents were the epitome of awesome since my mom had me at the age of 40... That really is awesome to read.

 

[phill4paul]

Glad to see you were able to handle the emergency situation and had what was needed on hand. Take a breather and chill some. You deserve it.

 

[presence]

Thanks guys... I'm finding my happy place. 'preciate the hugs.

All is generally chill. The kid is dosed. He's wheelin' around in his wheel chair. I'm 2 glasses into Barefoot merlot and moving on to cooking dinner.

That was some real deal life there for a hot second.

Kind of a paradigm shift.... I kind of, about, pretty much, almost feel responsible to have to stick him from here into the future. By all means I have the ER option still there... but I do feel a bit on the other side.

Strange times.


I think I'm gonna leave the op right where I left it... It best reflects where I was.

 

[amy31416]

My god that must have been terrifying.

I took care of a sub-clavian venous pump on my dad who was using an experimental medication that had a 24-hr refrigerated shelf-life, and one time after I changed it the pump started alarming and I almost pissed myself. Fortunately it was just one clamp.

Big hugs to you and major high-fives for all your practice. I was fortunate to have a nurse for a mom--she saved my life at least once.

 

[donnay]

((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))​

 

[Working Poor]

Big hugs for you and your little guy. You are at the top of my prayer list. Healing energy being sent.

 

[tod evans]

Way to go dad!

 

[Deborah K]

Big grandmotherly hugs for ya, Presence! I can only imagine what it was like. I had to give my departed sister-in-law shots in her stomach twice a day, as I was her caretaker at the end of her life. And I witnessed my son-in-law almost suffocate to death when he was on a respirator that got clogged, and no one around at the moment knew what the hell the problem was. That sick, scared feeling is indescribable. But, you do what you have to, to get through it, don't you. I will pray for your family, Presence.

edit: actually it was a ventilator....duoi...

 

[Athan]

*Bro hug*

He's lucky to have a dad as operator as you man.

 

[DaninPA]

'Nother *bro hug* here.

 

[moostraks]

***hugs***

Awesome that you stepped up to the plate and did what needed to be done and live to tell about it. Too many parents let fear disable them. Enjoy the snow.

BTW give your wife a hug for being the pin cushion. All that practice paid off.

 

[presence]

So... On follow up doses...


I'm now 3 for 3; no misses!

(actually 4 for 4 if you count my first one that I nailed but forgot to tape down)

This evening went really smooth. We kept totally cool all the way through; mom, jr, and myself just takin' care of business.

Paradigm has changed. Milestone.

We're also kind of breaking away from calling the doctor before each dose. We diagnose, we treat. Talk to the doc when we need more meds sent.



Stoked!

Kid's stoked too, "call it done" he says.

I'm hoping he gets back on his feet tomorrow.


thanks again for all the support,

presence




Also...

I've saved Medicaid min $500 / dose by not visiting the ER, which is liberating on the conscience. Now if I could just figure out some way to cook this stuff up in my kitchen....



see:

Thread: 3D Printing Drugs: Medical Miracle or Illegal Substance Enabler?

 

[I<3Liberty]

Sending virtual hugs your way.

Hopefully he's feeling better today and treatment is going well. Have you looked into any clinical trial treatments?

 

[Cleaner44]

Well done brother! Tip of the hat for being prepared and self sufficient.

 

[presence]

Sending virtual hugs your way.

Hopefully he's feeling better today and treatment is going well. Have you looked into any clinical trial treatments?

There are meds in the pipeline that have a half life of 10 days. My kids meds have a 24 hour half life. There are a slew of other options including gene therapy also in various stages of trials. Generally, clinicals are for adults only right now and any kind of gene therapy is also a decision that parents generally cannot legally make as there is a treatment available so its not really life or death... he just needs his meds. (plenty of fine print here) I don't know that I'd even want to put my kid first on the line to try gene therapy out anyway. I've been having the discussion with the mrs about whether we're really even interested in the 10 day product before its been out a few years. I'm kind of conservative on those type of things. We were kind of sketchy at first about the GM meds he is on currently, mostly on the fact that they're GM protein from another species and they've only been around a few decades; we had him on human blood (much love donors) based products for his first 2 years. Humans are dirty though (no offence donors) and its 2000 donors/dose so every rose has its thorn. Baseline is the kid bleeds which puts you in a state of have to. Really glad to not "have to" go the the ER any more.

 

[Dianne]

Going to say a prayer right now ... God be with you and your child .. What's his or her name?