Monday, April 30, 2012

Someone replied!

Goodness, someone finally replied.  The good news is we don't have to go down a day early, we can go down the day of surgery.  Surgery is an "afternoon" slot, we won't have any more info until two days before. 
Here's what goes through the head of a medical mama when she hears afternoon surgery:

Pros: Yay, don't have to go down the night before! Saves $50, a night of poor sleep and one time of setting up and tearing down all his equipment.  (About 20+ minutes up, and 20 down).  We'll still bring everything in case we have to stay in a hotel for any length of time. 

Cons:  Very hungry child to distract.  Early AM surgeries they sleep through most of the hunger.  For example, (this is vaguely, haven't done that math yet)... 2pm surgery means (3pm surgery, lol)..  no "food" after 6am, no clear liquids after 10am. (yay for a tubie that can eat overnight!) That's a long drive down w/ a hungry child!  We might have to do drive through and stop somewhere to play so he doesn't beg for the random food we can give him.  Other big con, surgery never runs on time.  "on time" is a half hour late, normally they're an hour to an hour and a half behind.  Which means, for a 2pm surgery, you have to be there at 12:30, and are in a 8x8 foot room from 12:30-3:00.  That's when you pray for an opportunity for a long, uninterrupted nap (ha, ha, right!?)

And, because i'm lazy... this is copied from FB:
 Hotel booked... and even the one closest to the hospital (and cheapest) because we're seeing a doc from University Hospital, we can (hopefully) stay at the hotel for UC patients.

That saves us about $15 per night, and the cost and hassle of driving 15-20 minutes to and from the hospital (which... means i'll actually leave the hospital!)  This "hospital hotel" is a few minutes walk that's safe enough during the day i can go by myself.  We're sending in our info to the Ronald McDonald House.  Even though it's a longshot, we're going to try in case we end up there for 5+ days.  That would save us about $15 more per night, plus almost all food costs (it adds up fast!).  The last 2 big surgeries we spent 8 days in the hospital, and 3-4 at the RMH.  We are hoping for less this time! We've learned a lot since then that should get us out sooner!

So, there's a peek into the logistics of the day of surgery.  Don't be jealous, now :)  

Saturday, April 28, 2012

12 days...

We're under the two week mark til surgery yet again... let the packing begin! Really need to get a medical shipment before we leave though! One suitcase down... Hard to pack when you don't know how long you'll be gone. (hence, the "uh-oh shipment box i'll either send w/ mom or leave for her to send if we get stuck there) Mistakes make great lessons... i've got an entire "you forgot, dummy" box of all the things that i've forgotten in the past. :)
Not even sure yet when we're going down.. No one will reply to their emails!

Someone resists change... i wonder who!

So, i log on to blogger, ready to post away and this new strange blogger comes up.  So, this is probably that new interface they've been mentioning and beckoning me to switch to for the last, oh, 6 months.  Hmm. 

Anyways, now that i'm done being distracted by something shiny...

Here's a video (hopefully) and some pictures (ideally) of what we've been up to lately.  Maybe you can tell i don't have a lot of faith in the whole blogger/internet/my computer's abilities. AH ha! After three tries, i win!

 In other news, the restaurant formerly known as "Gordy's" opened recently.  And quite literally, the day after I heard, I was there. (And got a free lunch, thanks mom and dad!)  While I'm not totally sold on the new deal, it was the closest i've had since it burned down years ago.  The house salad gets an A, the ham and cheese sub a B (not much melty/toasty cheese, sad) and the no small salad and small sub combo gets an F!  Great to see some old friends (well, old youth pastor) that i hadn't run into in ages!

(if you haven't noticed, my upper case i is still broken, as well as a few other letters... too lazy to fix the i, too cheap to fix the problem!)

We were also able to sneak in a trip to the zoo on Wednesday!  Hopefully, if this video ever loads I can add pictures too). 

Thursday in speech therapy Mr. Micah was a total stud and was able to "drink" 2 oz of his tube feeding formula in about a half hour.  Normally he putters after about an ounce of liquid. Way to go Micah! That means we've gotten both 2 oz of baby food and 2 oz of liquid in a half hour! That's progress (very slow progress, "inch"stones, if you will, but still!)

Monday, April 23, 2012

Toddlers have "Mondays" too (and so do their mothers)

Child decided to get up at 5:30am, (normal is about 6:45). Despite valiant efforts to get him to go to sleep, i gave in at 6:15 and tried to be as boring as humanly possible so he didn't feel the need to get up in the future. (Yeah, right, don't worry, i'm aware of the ridicousness of this). His pulse ox went off multiple times overnight, and i was pretty well ready to throw it out the window. Guess who isn't a morning person? Half of the morning cup of coffee got dumped on the carpet...
Got to his appt to get his SMO's... (2 months after being measured... insurance approval=forever)... only to find they didn't even REMOTELY fit. Re-measure, and hopefully get them in a week or two. Speech therapy=totally unorganized (which toddlers are great at catching on to...) Came home to realize i forgot to feed him for the last hour. His speech therapies are an hour different, and i always get screwed up. Go to feed him, feeding extension comes out, and he gets a bath in pediasure.
Really have nothing left to do but shake my head. if i were the stiff drink type, we'd have been there by noon!
Hope you all haven't blown away today!

Tuesday, April 17, 2012

Not much to say...

Not much going on here... Hashing out the pre-surgery details (and having a serious case of getting nowhere FAST! Which reminds me... anyways!)
Micah's SMO's came slower than molasses, due to lovely insurance. He should get them on the 23rd, then the fun will begin. Unfortunately these are measured to fit his little ever-growing foot... So, lets hope his foot hasn't grown in the last 2 months. They guarantee them for 3 months, but insurance only pays for 1 pair every year (and they wasted 2 months already!) There's something seriously wrong w/ the system!
Baby's ultrasound is in about 2 more wees. Not sure what we'll really find out then... No news would probably be good news. We have some pretty significant decisions about how much intervention to do so this baby stays put for an ideal length of time. There's a million factors! Hopefully the u/s will help with that.

Tuesday, April 10, 2012

The dreaded surgery post.

So, surgery in a month. For whatever reason, i really had thought this would get easier with time. Well, in some ways it has. My packing skills are pretty great (as long as everything gets to the car, oops!). But, other than that, I'm beyond tired of this. (Of course, i'm beyond tired, but that's baby number 2's fault.) Seeing your child miserable is... miserable. Handing him over to never really being able to know what's going to happen is... miserable. We trust our docs, but mistakes happen. My son has a messy, ugly disease that only means more unexpected things happen.

This surgery is... a little out there. We have no guarantee it will solve our problem, but it will permanently cause him damage, whether it helps or not. Try to swallow that (no pun intended). That being said, we are between a rock and a hard place. Right now, if something were to happen to his trach and we couldn't get it in again (not totally unheard of), they have no access to his upper airway to intubate (tube down the throat) and that's really scary. His mouth opens about 1 cm. Even if his mouth were to open enough, his upper airway is at least partially obstructed by mass, so if they could get a tube down, it wouldn't be much of one. They can't get to the mass to try to remove it, because they can't get tools in to do anything (i.e. trach never comes out). So, the doctors thin based on his Mri that a muscle in his mouth is so enveloped in \LM that it isn't moving, it is permanently clenched. Well, happens that the muscle is a pretty darn important one.. the strongest muscle you have to chew your food. (Clench your teeth, it's the muscle that you feel near the front of your ear). Really, the muscle isn't really mostly there anyway. The theory is that it never formed correctly and has his mouth has gotten bigger, it hasn't stretched... So we have been progressively losing on this for awhile now. So, the answer is to go in on his old incision and go up through his cheek and remove the muscle. And hope that it helps. And that what it hurts can be overcome. We're told the other side will eventually learn to compensate, but we really hope he can close his mouth after surgery... if he can't, it will be devastating. He has MORE than enough going on in that little mouth of his... We can't predict how it'll affect his eating... Last big surgery we spent 6 months to get to where we were before surgery... So, starting all over again.

Not to say all this to whine, only to say it stinks to have to make decisions like this one (not to mention going through with it!). Yes, things could be worse, but that doesn't mean it's not awful anyway. Apparently i'm learning you can be thankful for what you have, and angry/upset/frustrated at the same time. A good lesson.

This post brought to you by a super huge nap. :)

Happy Easter!

We had a typically great but busy Easter Sunday! :) The youth had their SonRise service and served breakfast. We went to my Aunts for a super yummy lunch (for which i forgot to bring my food.. UGH!) and an Easter egg hunt. Fun was had by all! A special thank you to my aunt for doing such a nice, Micah friendly Easter basket. it's not easy, but so appreciated!

Tuesday, April 3, 2012


Next surgery will be Thursday, May 10th.