Pamidronate infusions today

We're here.  Supposed to be here at 8:30 but we were a little late. At least is wasn't snowing or freezing rain as it was earlier.  Checked in.  Headed to Comfort Zone for IV start.  Colin went first.  Got it second try.  I was about to blow but the got it.  No tears.  Hardly any fuss.  Don't know what his heart rate was because I forgot to turn his monitor on.  They got Casey on second try, too.  No drama. He was laughing at the nurses and talking on his DynaVox while they did their thing.

Headed up to the Infusion Bay.  IV bolus.  Tylenol given.  Wait for labs to come back.  Started Pamidronate.  Colin picked Frozen to watch, which was odd because he has not wanted to see it at the movies or on DVD.  He was totally absorbed while watching it but says he didn't like it.  After that the nurse asked if he wanted another movie or TV.  I said probably TV because it wouldn't be too much longer...  The nurse looked at me like I was nuts.  She said it was running over 4 hours.  We'd always run it over 2.  So they looked back and saw we had done that before.  Talked with doc.  Revised the rate, but somehow we still had to do it longer because of concentration...so we'll be her longer than normal.  Phooey.

Casey was pretty ornery at first.  Jenny came from Child Life with the Jim Carey grinch movie that Casey had told her thT he NEEDED to watch next time he was here.  She had looked over the entire hospital last time.  I guess she picked up a VHS copy from somewhere.  He totally multi tasked, DynaVox, iPod,--he even asked for wii and Jenny set it up for him so he could see it from where he was laying and played it with him through the glass do his room into the common area.  A little spoiled, perhaps?  Right now he's listening to Water For Elephants on his e-reader.

Much of the time there's no one else in the bay.  There are only 3 rooms.  This afternoon a little kid came in for some treatment-I'm assuming some sort of cancer/chemo treatment.  Breaking my heart with the wailing and crying.  Sigh.

This is a little stilted because I'm typing on the iPad.  For some reason I couldn't get my laptop on line.

Ouch.  I got a crown today.  Broke my tooth the end of February, during break.  Of course Dr. Molinari's office was closed for vacation.  Got in a week or so later and sure enough, broken tooth, but not so bad that the nerve was exposed.  Anyway, got my temporary crown got done yesterday.  I was there for an hour and 45 minutes!!  The worst part was that darn needle.  After the Pina Colada topical, he used a huge needle with the anesthetic in my gum and slowly pushed it over at least a whole minute.  My eyes watered but it really didn't hurt too much.  The second worst part was when he used the slow moving drill and that kind of knocked my jaw around a bit. 
. 
I had a crown done a while back and my face got totally bruised.  I'm waiting to see if that happens this time. 

Julia actually made it here for 9:30 to help Gene out with Colin.  Miracles do happen! 

Casey had an outing today.  They went to the mall.  Fail.  Casey was totally belligerent and yelled the whole time.  I actually don't blame him.  Last several outings have been to the mall and he hasn't done a whole lot there.  But he had his power chair so at least he could drive.  Since his chair has been broken he hasn't been able to drive so the mall was pretty pointless. 

AC came over.  We started playing Indiana Jone's Lego wii.  It's not for the wii u so it took a while to get used to the controls again, but Colin didn't mind.  We actually did pretty well.

Day didn't turn out too badly

I was expecting to have more of a challenging day.  Had the boys last night.  (Colin slept great.  Casey slept well, just wanted to be flipped every hour).  Had to get up to do the morning thing--dog out, feed dog, feed cats, take meds, get coffee, get meds for Colin, Casey, etc.  Then Karyna came for Colin a bit before 7 to start his day.  Gene helped me get Casey in the shower.  Oh, he had no nurse today so I was his 'nursey' and he was having Paula work with him here today...

Casey got to relax and hang out for a bit before Paula came at 10:00.  Got him up in his chair and ready in time. 

Gene had a luncheon at The Inn at Essex for work today so he left at 11 something. 

After Casey finished with Paula, Karyna helped me get him down and situated in the living room. 

I was starting to fade, at this point, but not feeling as tired as I expected. 

Aunt Chris and Julia arrived at about the same time...1:30 or so.  Casey was happy to see her.  Colin had to wait until 2:00 when he finished school to see her. 

Gene ended up coming home not too long after that so I got to go up for my nap, wahoo!  I face planted on the bed and slept for a solid hour.  Delicious!

The rest of the day we just hung out and did our things.  Plants VS Zombies walk throughs for Colin on the ipad.  Casey had control of the big TV and had his Google Maps AND he insisted he wanted to listen to a book.  He asked specifically for Ellen's book but we had borrowed that from the library.  I found him From the Mixed Up Files of Mrs. Basil E Frankweiler on CD so he seemed okay with that.  (Gene had to hunt down a CD man ((is that what they are called)) for him to listen to it on.)  Aunt Chris had brought a couple of things for the boys...cute little bean bag pillows, some things she scarfed from the hospital in Florida.  She also brought the new DVD Hunger Games: Catching Fire.  We'll save it for this weekend when we are all in a movie mood. OH, and I got some chocolate covered marshmallows and some HoHos from Trader Joes.

Time for bed soon.

Oh, I haven't talked much about Dad and his surgery on the blog.  I was going to write a separate entry but haven't yet.  He's finally starting to feel better and better each day.  It's been about 26 days since he had open heart surgery.  Been a few complications along the way but he's been working hard in rehab and should be doing home next week.

What's that smell??? OH and snow day #2

It crept into my nostrils in the middle of the night.  The dreaded smell.  FORMULA. 

UGH.  I couldn't see anything right off.  I checked Colin first.  We feed Colin through an open syringe with the end of the feeding tube in it so it drips into his feeding tube extension so he gets the food, but it also lets any air buildup escape so his belly doesn't get distended with air that he may swallow from the bipap.  Anyway, it's happened before...either the feeding tube end falls out of the syringe, his tube came undone from his Mic-key button, or there was an air pocket and the syringe filled up and over flowed with formula.  Nope, his set up was perfect and running fine.  I glanced at Casey and didn't see anything unusual.  I was kind of stumped.  BUT, it was dark, and I didn't have my glasses on so I can't see very well without my glasses.  I could see that Casey's feeding bag end was attached properly to his extension.  I could see that the extension hadn't fallen out of his belly.  At this point, Gene has heard me so he comes in.  And, there it was.  The darn little med port had popped. 

Gene mopped up what he could, but later on I will have a massive clean up.  We have a supposedly waterproof mattress cover but the formula has seeped through before.  Time to get out the steamer!!

So, we won't be hanging out in bed all day in our pjs today since I'll have to get Casey out of bed to clean up.  I can't hardly stand the smell of the formula so I won't let it go too long but we will let them sleep in.

YES, the biggest snow storm of the season started yesterday, March 12th.  We got the robo call last evening that school was closed.  Casey was to have Paula here today, anyway, since we have no nurse for him and he would have only had two hours of school.  Colin was over-the-moon happy about no school since he would have had a normal full day.

Around 6 AM I got a call from the VNA that Karyna (Colin's nurse) wasn't going to make it in.  We had talked about it yesterday so we weren't surprised to hear.  From what I see outside it looks pretty nasty; windy, 10 degrees, and probably about a foot and a half of snow, with drifts much higher.  I can see there are cars traveling on Route 7 but they're going slower than normal.  I'm surprised to see any cars at all.

So, I'm awake for the day--at least until I get a nap.  I have the boys again tonight.  Staci missed last night because of the storm so she said she could work on Friday night instead.  I'll take it!

back to school and braces (back and hand)

We did it.  Both boys made it back to school today.  Poor Casey had to get up at 6:15 after being used to sleeping in for the past 11 days.  He was less grumpy than I had anticipated.  He and Julie made it out the door by 7:30.  Colin kept his eyes closed as long as he could but then woke up fully and was in a good mood. 

Colin was in a good mood, but not in a mood for focusing.  But, that was kind of anticipated by Priscilla and Mel so he didn't get in trouble, ha ha.

Deb from Biomedics delivered and fitted Colin's TLSO and hand splint this afternoon.  He was supposed to get a hand splint for each hand, but one of the boxes that clearly said "left" was a right handed one so she'll have to deal with that.  He didn't love the hand splint but it clearly fit well and seemed comfy.  We're supposed to do some range of motion, a little stretching and then put them on.  He'll start using them in the afternoons to get used to them and eventually go to nighttime like Casey.

Hanz WHFO--wrist/hand/finger orthosis

It may look a little bulky but they really aren't and they are light weight.

The cover totally comes off and can be washed in the machine :)

Can't believe I didn't take a picture of him in his TLSO.  Today Deb brought it back today for a second fitting with the hole cut out for his mic-key button.  It seems like it fits really well, but we'll see tomorrow when we put him in the stander.  This is our first two piece TLSO.  I'll say that it's so much easier to put on and take off--whoo hoo!  It's also very sharp looking.  See the neon green straps?  See the apps print on the brace?  Who is more hip than Colin???  Just FYI, the belly/back brace was manufactured by Spinal Technologies.  It was made from measurements. 

Casey had a good day at school.  I didn't get any details but heard he was good. 

This is the start of a long month...We're short a full time day nurse for Casey as Nancy is out with knee replacement surgery.  So, Nurse Julie is doing extra so Casey can go to school Mon, Tues, Wed and 3 our of 4 of the Fridays.  Thursdays Casey's para educator will come here and work with him for 2 hours.  We're also down another night of nursing so I'm nurse Thursday and Friday nights this month.  Colin only has 3 days of nursing so I'll be a busy bee.

Ears

We made it out of the house on time today--8:15 or so.  Gene had warmed up the van and got us a little gas so that was a good thing.  It was 0 degrees! 

Ran into Debbie from school in the lobby of Fletcher Allen.  I guess she works as a customer service rep as well as at school.  She tried to get Casey to chat with him but he wasn't having any of it. 

Got in to see Dr. Hubbell pretty quickly.  I noticed that the person checking in after us had an appointment with him 5 minutes after us.  He must rake in the bucks seeing patients for only 5 minutes!  And, he literally did see us only for 5 minutes.  But I guess it was okay.  He tried to look in Casey's left ear and couldn't see a thing because of all the debris in there.  So he got a good sucking out.  We teased him because we said we wished the suction hose was clear so we could see the junk coming out.  Nurse Julie and I love that kind of stuff--as long as it's coming from Casey, anyway.  He suggested we now do Ciprodex drops for 7-10 days and then come back in 3 months.  I had asked about new tubes but he said let's wait and see. 

Got a coffee from the kiosk and headed up to see Mrs. Marshall, Julie's mom.  She was in for a 'tune-up'.  She is getting some IV antibiotics and respiratory treatments (no, she does not have a flu or anything catching).  So, we made her day :)  She was happy to see Julie, and then I came in and then she was over the moon to see Casey.  He was perfect!  No loud vocalizing.  He was nice and quiet and listened and said a few things on his DynaVox. 

Hit the gift store and Casey wanted to get Grandma (well, we call her that) a book.  We know she likes puzzle books so we picked her out one and some Jolly Ranchers.  Julie ran them upstairs to her while Casey and I got him on wifi. 

We were fading, at this point, so we headed home to get some food. 

Colin was good for Gene. He wanted to doze and listen to the radio so Gene just worked from the wish room and Colin hung out in bed. 

I got Colin washed up and dressed and everyone settled into the living room. 

Had a little lunch.

Took advantage of Julie being here and Gene so I went up for a nap.  Julie and the boys played some wii. 

I made some Rice Krispies treats.  Played some more wii.  Talked to Chris, Mom and Dad.  And that's where we are now. 

Oh, earlier, Gene said, "Where's Jaxon?"  Usually Jaxon is in the living room or up our butts following us around.  I went and looked for him and found him, Moxie and Nugget staring at a dead vole in the yellow room!! GROSS!!!  I guess the voles taste really bad so they don't eat them, but they were still interested in watching the dead thing.  I think it was Nugget that got it.  I had seen him sitting by the back room not long before--that's usually a sure sign that there's a creature.  Thank goodness Gene was home to get rid of it!