Thursday, May 10, 2012
Waiting game.
Surgery started on time. They're saying 2 1/2 hours, but always hard to say w/ these. (That would put us at about 2:30) No updates as of yet.
No updates as of 2:30.. they should be done soon, but i'm not holding my breath.
Tuesday, May 8, 2012
Today's To-Do List/What got done
1) Call nursing agency (forgot)
2) School system eval, 8:30-10:00
3) Call nursing agency #2 (remembered!)
4) Text nurse to come over from 10:30-1, short shift!
5) Meet w/ nursing supervisor, leave at 11.
6) Get interrupted by call from hospital... (then call Travis, and text others details)
7) Run errands: Walmart, groceries, post office, video store, be home by 12:30
8) Get call from Travis that Ped called and said they found someone to supply his medicine, phew!!
Napping child!
6) Call Apria (ooh! Got out of $150 bill!)
Alright, it's 2:30... Not doing too bad. Still left...
7) Call neuro and reschedule
8) Call nursing agency again. Yes, really. Believe it or not, she's not my best friend.
9) Finish packing...
10) Pick up aforementioned medication (trip 3 to town... really wishing we weren't 10 miles away!)
That's as far ahead as i'm willing to think. You can probably guess why.
But, for info: Surgery is at noon. They scheduled if for 160 minutes, i want to say (2 hours 40 for those who try to avoid math). Really have no idea how accurate that'll be. Bummer thing is if we want to drive straight through and not stop we have to leave at 6:15, and i'm not sure we can get away w/ not stopping for 4 hours w/ a got up too early 2 year old.
The evaluation was... tolerable. After about 45 minutes he was toast, and they could tell. Hopefully they got a decently accurate picture of him. What they wanted him to do in PT wasn't hard at all (baby steps on a staircase, trampoline w/ handles, etc) Only thing he couldn't do was walk a straight line on the floor and walk sideways on said line. Not sure if 2 1/2 year olds are supposed to do that! Time to put him in gymnastics :) :) :) Wouldn't that be funny?
1) Call nursing agency (forgot)
2) School system eval, 8:30-10:00
3) Call nursing agency #2 (remembered!)
4) Text nurse to come over from 10:30-1, short shift!
5) Meet w/ nursing supervisor, leave at 11.
6) Get interrupted by call from hospital... (then call Travis, and text others details)
7) Run errands: Walmart, groceries, post office, video store, be home by 12:30
8) Get call from Travis that Ped called and said they found someone to supply his medicine, phew!!
Napping child!
6) Call Apria (ooh! Got out of $150 bill!)
Alright, it's 2:30... Not doing too bad. Still left...
7) Call neuro and reschedule
8) Call nursing agency again. Yes, really. Believe it or not, she's not my best friend.
9) Finish packing...
10) Pick up aforementioned medication (trip 3 to town... really wishing we weren't 10 miles away!)
That's as far ahead as i'm willing to think. You can probably guess why.
But, for info: Surgery is at noon. They scheduled if for 160 minutes, i want to say (2 hours 40 for those who try to avoid math). Really have no idea how accurate that'll be. Bummer thing is if we want to drive straight through and not stop we have to leave at 6:15, and i'm not sure we can get away w/ not stopping for 4 hours w/ a got up too early 2 year old.
The evaluation was... tolerable. After about 45 minutes he was toast, and they could tell. Hopefully they got a decently accurate picture of him. What they wanted him to do in PT wasn't hard at all (baby steps on a staircase, trampoline w/ handles, etc) Only thing he couldn't do was walk a straight line on the floor and walk sideways on said line. Not sure if 2 1/2 year olds are supposed to do that! Time to put him in gymnastics :) :) :) Wouldn't that be funny?
Monday, May 7, 2012
The big eval...
So, my baby is about to enter the school system. First, I'm not sure how this is possible. Surely he's too young... he would be too young if he didn't qualify for special education, so i feel a little better.
Tomorrow is his big evaluation, and they have two hours scheduled. Apparently they forgot he's TWO. This could be very interesting. Apparently they'll have a ton of papers to fill out, but I'm not sure what more they could possibly need beyond the pages and pages of info i filled out earlier. A few people have given me pointers, but that doesn't mean i don't feel i could be completely blindsided...
Plus, no one loves to have their child evaluated when they're going to find problems... he's perfectly fine the way he is! Sure, he's delayed, he's been since day 1, but i've gotten over it, and so you need to follow suit! Hopefully he gives them a good clue of what he can and can't do, so he gets what he needs. That's what's important. *repeat often*
Well we're off to play outside, because he wants his shoes so he can go outside. And.. its not raining. :)
Tomorrow is his big evaluation, and they have two hours scheduled. Apparently they forgot he's TWO. This could be very interesting. Apparently they'll have a ton of papers to fill out, but I'm not sure what more they could possibly need beyond the pages and pages of info i filled out earlier. A few people have given me pointers, but that doesn't mean i don't feel i could be completely blindsided...
Plus, no one loves to have their child evaluated when they're going to find problems... he's perfectly fine the way he is! Sure, he's delayed, he's been since day 1, but i've gotten over it, and so you need to follow suit! Hopefully he gives them a good clue of what he can and can't do, so he gets what he needs. That's what's important. *repeat often*
Well we're off to play outside, because he wants his shoes so he can go outside. And.. its not raining. :)
Friday, May 4, 2012
Stressed...
For the last three days, M's needed to be suctioned more frequently and has been feeling warm. No fever, but these are not things you want to see this close to surgery. The good news is that it's not changed over the three days, so we're hoping it's allergies/change of weather. For some reasons a lot of trach children have more trouble w/ weather change. Either way, it can cut it out!
Other problem is they can't get his reflux medicine. The compounding agent is on back order, and insurance won't cover the drug in any other formulation. This has been an ongoing problem from what i hear... and it's so frustrating. it's sodium bicarbonate! Not rocket science! We can not be without this for more than a day or two or he will start throwing up, not what we want before surgery.. or ever. Usually once he gets going, it's hard to stop. So we'll see how much it is and if we can get a couple of days worth to tide us over. He's not responded well to similar drugs in the past.
Oh, what fun!
Update: We ended up buying a different formulation of the med without insurance. Glad we have insurance, lets say that! We got enough to last us til we get to Cincy. Couldn't chance having issues at this moment. So far the potential cold is holding steady. Hope it stays that way!
Other problem is they can't get his reflux medicine. The compounding agent is on back order, and insurance won't cover the drug in any other formulation. This has been an ongoing problem from what i hear... and it's so frustrating. it's sodium bicarbonate! Not rocket science! We can not be without this for more than a day or two or he will start throwing up, not what we want before surgery.. or ever. Usually once he gets going, it's hard to stop. So we'll see how much it is and if we can get a couple of days worth to tide us over. He's not responded well to similar drugs in the past.
Oh, what fun!
Update: We ended up buying a different formulation of the med without insurance. Glad we have insurance, lets say that! We got enough to last us til we get to Cincy. Couldn't chance having issues at this moment. So far the potential cold is holding steady. Hope it stays that way!
Wednesday, May 2, 2012
Healthy baby...
Healthy baby girl! We're so thrilled that she is doing great!
The high risk doc was glad to see Micah (he repeated, a miracle baby!) doing so well :) He also said he doesn't expect to need to see him again... yay!
Baby was plenty happy to show us her face and profile, we have some great shots! The ultrasound tech was 99.9%-paint-the-walls-and-go-buy-girl-clothes sure we were having a girl, even this early. So from here on out the plan is to go the "normal" planned c-section route!
She was a little squirmy but cooperative! She was moving her mouth and moving her arms. And, big surprise, she was sitting on her feet.... and sitting cross legged... :) Everything measured nicely for her age, and even a little big!
We're all so thrilled and are praising God for a healthy little girl! :)
The high risk doc was glad to see Micah (he repeated, a miracle baby!) doing so well :) He also said he doesn't expect to need to see him again... yay!
Baby was plenty happy to show us her face and profile, we have some great shots! The ultrasound tech was 99.9%-paint-the-walls-and-go-buy-girl-clothes sure we were having a girl, even this early. So from here on out the plan is to go the "normal" planned c-section route!
She was a little squirmy but cooperative! She was moving her mouth and moving her arms. And, big surprise, she was sitting on her feet.... and sitting cross legged... :) Everything measured nicely for her age, and even a little big!
We're all so thrilled and are praising God for a healthy little girl! :)
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 :)
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 :)
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