Pulmonology visit and blood draws

6 hours later we are home!  But, we did go to Germs R Us afterwards so it wasn't ALL time spent at the hospital. 

Colin needed scoliosis X-Rays so we had to head out early.  We were out of the house by 8:50 or so.  I wasn't so thrilled with the X-Ray people as we usually are.  We had to go to the Emergency X-Ray are since the Nuclear 1 floor unit was not working.  I mean they were nice, and mostly accommodating, but didn't quite "get it".  They kept wanting Colin's body to do things that it couldn't.

We actually made it up to the Children's Specialty Center just before Casey's appointment was supposed to start.  Quick blood pressures and O2 sat readings and I gave them the boys weights and heights.  Casey=66 pounds, 55 inches and Colin=47 pounds and 52 1/2 inches.   Colin and Casey both measure the same from head to hip!  Casey's spine was fused when he was 6 and a half so I'm sure he would be taller if he had been able to grow properly. 

Visit with Dr. Lahiri was good.  He wasn't rushed or anything, which is always a good thing :)

Casey:  talked about his auto-cycling at night.  He doesn't think his trach size nor his volume need to be upped.  He said we could do an X-ray or bronch but doesn't think it's necessary.  He suggested to up his PEEP a bit and see what happens.  He also checked out his ears because Casey was complaining.  The side without the tube looked odd to him--the drum looked like it was very thick.  He wondered if something was hiding behind it.  We saw Dr. Hubbel (ENT) 6 weeks ago and he didn't say anything...So, we're going to try some Amoxycillan and see if anything changes in his comfort.  We're also going to increase his Robinul from .8 to 1.0 in the AM, and .6 to 1.0 in the PM.  He's always spitty but this may help a tiny bit and it's still a very low dose for his size.  Oh, and we also talked about a time to switch him over to the Trilogy.  Talking about April, when the worst of the RSV and flu season has passed.  I guess RSV is rampant up in the PICU and floor right now.

Colin:  talked about how Colin is on his bipap even more than he was last visit we had.  I told him that he's not holding his SATs as well as he used to off of bipap, although overall, his heart rate has been much better (lower).  We looked at his scoli X-Ray and he first remarked at how fragile his bones look, sigh.  He also showed us how Colin's trachea is extra wide.  I hope I get this right--he said it from all the pressure of the bipap keeping it open and then something about cartiledge and oh, now. I forget.  I'll ask Nurse Lauren tomorrow and maybe she can make it clearer.  But, basically, he thinks that when Colin is coming off bipap now he is collapsing his airway and he has no reserve to use to breathe.  We will up his IPAP from 19 to 20.  We talked the "T" word, yes, trach.  We've briefly talked before but now it seems like we're veering more towards that direction.  Dr. Lahiri said all that he wants to do is make him safe and comfortable, and that's what we ALL want, right?  He said we could pick who we'd want to do the surgery.  He doesn't think there would be any issue at all because he hasn't been intubated often and has a normal airway.  He also said that since we already have Casey with a trach, we wouldn't have to be in long.  Just long enough to get him comfortable with good settings and get through a trach change or two.  Other than that, we MAY try him on Robinul.  Not that it will help him with his breathing but just to lessen the amount of spit that comes out of him!

We briefly talked about Pamindronate again and he said he'd go out and talk to PJ (Dr. Z) and I forgot to ask him what he said.  Since it's been so long since we've done an infusion, wondering if we HAVE to come in to see Dr. Z or if we can just schedule the infusions.  I hate going in unless we have to!

Then it was time to get blood drawn.  Casey started having a melt down.  I truly think it was because we were talking about Colin and traching.  He's worried about his brother!  It took him a long time to calm down.  Julie got him out of his chair and onto the table and snuggled him up and faced him to the wall and gave him music on her iphone.  He finally calmed down and stopped crying. 

Someone came up from the lab.  They must have asked for someone extra experienced because she was good!  You could get a sense from when she walked in that she was nervous and wasn't quite sure what she was in for!  Colin went first.  She looked and looked and finally found an area that looked good and she got it first try!  I sure hope it all makes it to the lab without any mishaps!  Casey got his pick on the first try, too!  They were both good sports and didn't give the tech any guff. 

Finally, time to leave.  The boys had already checked out the gift shop while I was at Registration so we headed out. 

Decided to go to Germs R Us. I had a wii to return AND $15 in credit.  Casey and Julie decided to check out AC Moore instead.  We found 4, yes, 4 wii games and a DVD of Spiderman episodes.  I told Colin that some of those had to be saved for his birthday.  He seemed okay with that.  He will be 11 after all and should be able to handle waiting.  Two of the wii games were only $9.98 each and the second one was 40% off.  And two of the games were $19.99 with the second one being 40% off so I feel like we got good deals. 

Home.  Home.  Home.  We were all pretty spent.  Casey and Julie went and layed down well, he did) in his room and watched movies.  Colin headed to the living room to wii with Lauren.  I headed up for a nap after hearing that poor Nurse Meagan was in the ER with a slipped disc and wouldn't be in to work tonight!  Ugh, and she's supposed to be heading out of town later on this week! 

Gene seemed to have a good time without us.  It really is nice being home alone (with Jaxon, Moxie and Nugget) and doing your thing.  He was able to put on music that he liked; worked on the surround sound on the TV, answered the phone, took the dog out, and worked as well. 

So, some bad news.  Julie was doing something to Casey's power chair and noticed, yikes, the frame is CRACKED!!  I'll have to take a picture and post it.  There goes his driving until he gets his new chair.  And, this is after we replaced a bunch of electonics on the scanner, Gene refitted the back of the seat to the frame and I spiffed up the chrome and cleaned everything on the chair this weekend.  Big sigh.  MAYbe Gene can get his friend to weld the frame but Gene's a little worried that Scott might burn something on the chair like the new electronics....

Another stinky thing.  Casey has been looking forward to going to a Milton basketball game against Mel's son's team, BFA (I think).  Tonight was the night, finally.  Well, after his meltdown today and being tired, he was not in the mood to go, so I think we were off to a bad start.  Got Gene, Casey and Nurse Brooke out of the house around 6:50.  I called at about 7:25 to see how it was going.  They were already halfway home.  Casey had a meltdown and cried and complained.  Tried ear plugs, tried sun glasses.  We just cannot figure out why he really wants to do something and then he can't handle the event.  Gene says there's no way he's going to the Globetrotters for Colin's birthday but I WILL bring Colin. 

So, that's our update for the day.  I wish I was better at updating but I get tired at the end of the day and I am sick of how my cursor jumps all over the place when I type and I end up back spacing and deleting and retyping every couple of words, not exaggerating!

Big news for the O'Neill Boys!

Got a call this morning from Casey's Intensive Needs teacher.  She talked about the kids needing to do community service hours and that they were going to do a project as a group.  They want to do a huge, community bottle drive and tie it into math and science as well as their community service.  They will set up a bank account, manage the funds, come up with flyers, solicit business in Milton,  etc.  They want Casey to be the account manager.  They will report to him weekly with progress and Casey will track progress.  And, the best part is that the kids voted and that they want the proceeds to go to the BOYS' VAN FUND!  Their hopes are that once they have things set in place, they can do a bottle drive each year and find a family or community need to donate the money too.  What an awesome idea! 

Next week I'll go in to school and talk to the kids about why the boys need a bigger van, what the cost might be, a bit about the boys and SMA.  Talking to a group is not my forte' but I'll muddle through ;-)  I have to dig up some pictures of the boys squished in the van and, hopefully, take a video of how we have to squeeze them into the van, etc. 

It sounds like it could turn out to be a big, huge bunch of fun, and profit!  I really do like doing stuff like this and will help the students out however I can.

Colin and his gang.

We had a successful field trip to Carnes Arena with the 5th grade!  Of course, it took us longer than we predicted to get out of here but it was just as well because we had plenty of time to watch his classmates and FREEZE while we waited for Colin's turn on the ice.

I had never been to Carnes before but it's a really cool (pun intended) place.  The kids were all on the rink and skating away when we arrived.  I imagine it was chaos when they were all getting their skates on so I'm glad we avoided that part.

It was fun to watch the kids on the ice.  Some of the kids were evidently very comfortable skating and some were new at it and it was fun to see their antics.   Aunt Chris came to watch, too.

We went into the warm up room and readied ourselves for Colin's ice time.  At about 11:15 we made our way to the smaller rink and got Colin from his kart into the sled and settled onto the beanbag with his pillows and blankets.  Priscilla even brought a hot water bottle which she put under his legs and near his feet.  AHHHH!  A bunch of kids came to the rink to skate as well.  Initially, there were to be only a handful of kids but it ended up being a couple of handfuls :)   Mr Phillips and Mrs. TC were there as well.

So, Colin was very nervous, at first, but he bravely let us slide him onto the ice and Mrs. TC took off with him!  Nurse Lauren is a skater so she was out there on the ice watching over him and taking some pictures and video.  He went around a couple of times and said he was done, but we convinced him to go around a couple of more times.  Very proud of Colin for trying something new and something he was so unsure of!  He is a trooper!

Colin was supposed to be home by 2:00 to meet with Christina the PT from school to try out some different Hoyer slings but since it was still early Aunt Chris asked us to go out to Friendly's for lunch.  Sounded good to me!  We asked Priscilla, too.

Went to the Friendly's on Dorset Street.  Colin liked it!  He even said it was his favorite part of the day--weird kid.  I think he liked that Lauren kept him entertained with games and YouTube videos on her phone while we had our lunch and dessert. 

Made it home a little after 2:00...the weather started getting yucky--kind of icy/rainy.  Christina had a sling that was another kid's that we really liked.  She took the green one that we don't like (the one that is hard to get underneath Colin because of the stiffness and weird stays that it has.  If it works for the other child, we'll get to keep this one instead of the school having to order a new one.  Yay!

Casey stayed at home with Gene and Aunt Julia.  Mel came for a couple of hours and they did some school work and he was cooperative.

Skating away!

Mrs. TC and Collie

Me, Priscilla, Aunt Chris and Collie,

Another Angel

We lost another little one last night.  Chloe.  Beautiful and sweet little girl.  She was about 5-years-old and trached and vented like Casey. 

 I'm always saddened to hear of another angel passing but I don't always write about it here.  Many times we find out about a new angel from MJ and Brenda and Blankets 4 SMA.  They are usually the first to find out about newly diagnosed kids and thus usually the first to hear about new Heavenly angels.

I don't want this to become too sad of a blog.  Sometimes I get extra attached to a child and I was attached to Chloe.  I loved looking at her pictures--she was just so beautiful and sassy and her eyes sparkled!

So, instead of running out today and doing last minute shopping, I'll be staying here to be close to my Collie and 5-driving-minutes away from my Casey.  Sorry, Gene, you won't be getting the pack of underwear I was going to get today.  Sorry Aunt Chris, your stocking may be a little light this year.  I think you'll understand.

More treats made and Haddie plays Poptropica

Tiny bit of snow on the ground and flurries this morning.  BRRR cold, too.

After catching up on laundry and that kind of stuff, it was time to make my next endeavor of Peppermint Bark Rice Krispies.  Yes, you read it right.  I did it all in the microwave and it was easy, except for the drizzling part.  I am more of a clumper than a drizzler.


Boys finally stirred around 10:15!!  Casey was up before Colin.  Poor Colin must be going through a growth spurt or something but he's been falling asleep earlier than Casey (which is not heard of) and sleeping later.  They watched some Christmas videos including A Rolie Polie Christmas in memory of Lily.