Suggestions

There are a lot of well-meaning people around.  Ones who offer to help out, watch J, bring food, just keep us company, etc.  It's a blessing to know that so many other people care about my kids, even some people who have never met them.  I am so grateful.

But every now and then, some people just need to STFU.  Odds are, no one that reads this, in case you are wondering if it's you.  But in case you need details....

- Don't pity us.  Yes, taking care of our kids is not easy.  But it is worth it.  One smile from M, or having J say "mama" as I walk in just reiterates that.  Too many people take such things for granted.  We don't, partly because we have busted our asses off to achieve those small milestones.  Showing up then having to wait in the car because you "don't know how we deal with it" just proves you are the ass I thought.  It's ok to say you are sorry to hear that M is sick again, or that J needs testing.   Just don't feel sorry that they are my kids.  I wouldn't change that ever.

- Don't tell me decisions I make for my kids aren't appropriate.  They are MINE.  I will listen to advice, etc, but don't get offended if I choose a different path.  I get to hear all sides, and all advice, from all doctors, specialists, family, friends, nurses, etc.  Odds are, you only know a portion of their thoughts.  As their parents, we know WAY more about all issues surrounding their health and development than any lay-person does.

- Keep your "it's my body" BS to yourself.  I fought for M and am damn proud of it.  And despite the risk to my life, I'd do it again in the blink of an eye.  She deserves to be around only people who think she is/was worth fighting for.

- Do not judge me if I get uneasy or panicky around pregnant women, newborns, or even TV shows (ie - A Baby Story, medical dramas, etc).  I understand all too well what is going on.  Been there.  Done that.  I still feel that fear. Daily. On my own.  Don't care to relive it just because you find it entertaining. 

- If it get sad about the "new normal" or "Holland," just give me a hug and let me be.  I don't need you arguing the awesomeness of my kids to me.  I know it better than anyone.  But that doesn't mean I can't get upset from time to time.

- Do NOT take my jokes about mass quantities of tequila seriously.  Really.  You must not know me at all if you think I'm going to become a drunk like that.  But if I want a drink or two, that's ok too.  It's not like I'm doing even that every day.  Hell, or even every week.  Most of the time not even every month.

-It's ok to live on chocolate, soda, coffee and cake for a few days if I want to.  I know my food groups.  I understand the consequences of ignoring them for a few days.  It will be ok.

Now off to take on some of that chocolate.  Saving the coffee for the morning.

June is on my shit list

Is this month over yet?  Please?

Ok, so M's SATs were getting worse and worse.  We took her back to the pedi Friday.  Growing lots of crap out of her trach, so we are doubling it up on the antibiotics.  Omnicef and bactrim.  Plus adding predinsone to the mix.  I don't want my kid to be worse, but I must admit it was reassuring when the doc told me she did hear just a bit of the wheezing I kept hearing over the previous 48 hours.

Then, just to make things fun, I get a phone call from my dad while we were in the pedi's office.  He was watching J for us.  And it looked like he had another seizure.  No shaking, but a lot like the other time I worried I missed something.  Playing like usual, tune out for a sec, then notice he's snoring on the floor.  Out like a light.  And won't wake up.  At least he was "back to baseline" within 90 minutes this time.  His best showing thus far.

Fast forward to Saturday morning.  Papa was back again helping out with the kids.  He wakes me at 7:15.  He can't get M's SAT alarm to stop going off.  It's not the alarm malfunctioning.  She can't keep her SATs up, so I crank her O2 up again.  Maxing her out on our at-home machine at 5 L.  And I still can't get her to stay above 88%.  Someone has GOT to be kidding.  So, after a phone call to the nurses' line, paging the on-call pedi, and reassessing every 10 minutes, I get to haul her back to the ER.

I must say, a bright spot in this shit-hole was ER Doc Jensen.  We'd seen him before, and I'm pretty sure he has his act together.  After listening to the story, he says that he's going to order labs, x-rays, etc, but that she will also be admitted.  Thank the Lord.  I told him that was exactly what I was hoping for.  This way I didn't have to pitch a fit to get it.  I just knew she needed to be on IV antibiotics.  He chuckled, aying he'd save me from having to pitch the fit.  I think he was smart and choosing to save himself. 

Highlights:  Admitted to 4, my favorite (not).  Needing 6+ L to maintain SATs.  Everyone thinks I'm a nut job since she looks fine, but we can only get her to 5 L at home.  Whatever.  Lots of tests run.  X-ray ok.  Labs are still in progress.  On lots of meds.  Residents are idiots (charts are there so I don't have to repeat M's life history YET AGAIN, so read the damn thing.  This is not story-time in kindergarten).  Since they are idiots, I let them panic over M's yellow/orange mouth (thanks sweet potatoes).  Morons.  

FF to Sunday.  M's doing better, despite an RT rubbing elbows with the residents.  Looks to be discharged Monday or Tuesday.  I'm fighting for Tuesday so we don't have to go through the "oops, we sent her home too early" thing again.  And now J climbs out of his pack and play, falling onto the floor screaming.  Just in time for his MRI and tubes on Tuesday.

So to steal a phrase from my most-awesome sister, I'm going to stop asking "what next?" because I think God it taking it as a challenge.

Damn fucking shit

Really? REALLY? I mean, really?

M is sick.  Again.  I'm hoping we caught it in time, but now I'm not so sure.  We don't know exactly what we are dealing with yet, but it's looking like either staph or strep based on prelim results.  Geee, fun!  If you can't feel that sarcasm from here, you really need to get a clue.

Yeah, she's still been needing a bit of oxygen all day lately, but last night, wow.  Her norm is up to 3/4 L.  Right now, as I watch her while I'm typing this, she's needing 2 1/2 L.  And it's not the monitor.  Shit.

Accepting all donations in chocolate please.

Upcoming

The latest big news - Jaime's in for ear tube surgery and an MRI on the 29th.  He's been dealing with lots of fluid in his ears the past few months.  ENT wanted to see if they would drain on their own since spring is a common time for that, but no such luck.  He's made such progress with his language, and she doesn't want it to start affecting his balance long-term, so she said let's do 'em again. 

I was all for it.  The past few weeks, mornings have been hell for the boy.  It's almost like he's gotten over-stimulated, hitting things, beating on his head, etc.  It's been awful to see him like that.  I asked if the fluid build-up could be causing this behavior (he's often going after the sides of his head, just above his ears).  Absolutely.  Whew.  Call me evil for being happy about that, but I am.  At least there is a reason for it, and it's not a seizure reason.

So we had ENT call Neuro and get the MRI at the same time.  Neuro wasn't going to put him under for just an MRI, but he was willing to piggy-back on another procedure if something else was coming up.  So there ya have it.  Tuesday, June 29.  Check in at 6, scheduled for 730.

Stay awake or stay away.

Is it really so much to ask for a person to stay awake while taking care of small children?  Really?  Of course, it doesn't matter if M is sleeping in her crib or on the floor and someone else is there.  But PUT HER DOWN if you are that tired!  My girl is too precious to risk your behavior.  And this isn't the first time. 

Over the past several weeks I've seen this person nod off while holding M many times.  She has been confronted, but the excuse of "I can't sleep at night" isn't cutting it with me. Last night, I'd had it.  M was on her lap, and she was so far out that her own head flopped back, smacking into the banister.  The response?  A giggle.  I grabbed M quickly.  Thankfully, M was oblivious to the whole thing and didn't get hurt.

I'm to the point of saying if you can't stay awake, then don't come over.  I am tired of the excuses.  I'll find other ways to deal. 

I'm just tired of people being irresponsible, especially when my kids lives and health are at stake.

Don't preach to me

As I was leaving for work this morning, I noticed that we had "THAT" nurse pulling in.  Oh joy.  Needless to say, I was not happy.  Now, you make think that she's no good with M, but that's not the case.  She does fine at the specifics of her job.  It's her mouth that needs some work.  Or maybe her filter.

She only comes out every once in a great while (thank God!).  But last time she was there, she tried pouring on the religious crap.  Don't get me wrong, I believe in God and know well of His mercy and grace.  I also know that I pay for my wrongdoing.  Because it is my fault. 

We were talking about how life is not easy with two special needs kids.  It isn't.  I'm not complaining because I adore my children just the way they are.  I am lucky and blessed to be their mom.  But having a 3-year old who could see or feed himself, or a 14 month old who could walk and breathe on her own, would make things easier.  But we deal the best we can.  She started spouting off about how God is like a gold/silversmith.  Huh?  I missed that parable in church.  She went on with how like a goldsmith hold the gold to the fire until it is pure, so God hold us to the fire until we are pure.  Until He can see his reflection is us.  All fine and dandy, until you think about how my KIDS are paying the price.  Really?  How DARE you insinuate that my kids' issues are because I am not "holy" or Godly enough!  Are you kidding me?  You have to be, because no one with 1/2 a brain would ever say such a thing to me, much less in my own house.  And the more I think about her saying this to me, the more offensive I find it.

So please, if you think of trying to justify the trials we are working through, please think twice before opening your yap.