Thursday, September 27, 2012

Chupacabra

Planned admissions are fantasies.


Fan.
Ta.
Sies.

At least the thought that they are more expedient and organized is a fantasy. A 12 hour wait in the local ER verifies that for me.

Ugh.

The important news is that Rambo is fine...... basically. You may remember that I said a week or so ago that he was requiring his vent more and more. It finally got to the point where it was almost full time. A few calls to pulmonary, an xray, and a rather frustrating evening waiting on call backs we were told we would most likely need to come to Hopkins immediately but not emergently, and to keep him exclusively on the vent. I have no idea what the xray actually showed because one doctor told me it looked WORSE than the one in July ( you know, when he almost died), one said there was only a tiny bit of collapse, and another said we needed to be in the hospital. 

All of that being said, we ended up getting a call the next morning saying we needed to go to our local hospital and get transported to Hopkins as a planned admission. 

Fine. But of course it didn't work that way. Because Theodore wasn't emergent we kept getting bumped back on the list. Understandable, but it made for a LONG day. We almost went home once but pulmonary told us we needed to stay. So finally a little after 1am the transport team was able to make it to us. We got to Hopkins around 3:30 and crawled into our beds very willingly at 5am. 

Then we crawled out of them a little unwillingly at 10:30 to get back to the hospital.

Today Rambo is doing really well. Figures. He has been on his trach collar all day and doing well. His secretions stink to high heaven but they are at least coming out as opposed to staying in his lungs and festering. The thought is that the tracheitis has never quite been squashed. It's looking at the moment like this may be our shortest stay yet. I forsee us out of the PICU in no more than 2 days. 

I am tired and am HIGHLY looking forward to sleep tonight. And I'm pretty certain the streets of Baltimore will be glad I'm not driving on them again at 3:30am.

Monday, September 24, 2012

Survived another week.

Well. We did it. Somehow we managed to survive an entire week with Ben gone. 


We all went a little crazy in the process, but there are 5 of us here, alive and..... alive. Ben is gone for another two days but after that thankfully he'll be home to stay. FOREVER. Right, Ben?

There have certainly been more frustrations than I can count. But I'm gonna try to name a few. 

For starters.....


Yes. Him. And it's really not his fault, his left lung is just absolutely useless at times. Which means lots of vent time. Which means lots of trying to entertain and keep busy in a 4 square foot area. Which means lots of headaches. This boy, thankfully, doesn't want to stop but that causes trouble when he has to basically stay in his crib. 

Frustration numero dos: his equipment. The company was recently bought out and there are some differences in the tubing. Things that should be flexible are stiff and vice versa. Therefore, his oxygen tubing is constantly getting crimped and his humidity tube is tightly bound in circles. Another headache. 

Frustration three, and the biggest: Somewhere between Mt. Washington, and the pediatrician and the pharmacy, one of Theodore's prescriptions was  written and/or mixed up incorrectly. Leading to an overdose 10x the amount he is supposed to get. This just so happens to be the med that "dries up" his secretions. Enter an 11pm call to the on call pediatric pulmonary doc at Hopkins. As well as two call backs from her and, thankfully, a now correct dose. Awesome. So now we have to watch for plugging in his airways. Just what he needs.

Frustration to the fourth: a phantom appointment at Hopkins. Apparently, I had scheduled it a while ago and then when discharged from Mt. Washington it was rescheduled. We showed up at Hopkins two days late. In the end, it was my mistake, but a call about having missed the appointment would have been helpful. So I effectively wasted my mother's and my mother in laws time and day. Sorry about that.

   
Do you forgive me?

And finally, the most continuous frustration of all: the nursing company. They have been completely unable to fulfill any of our daytime hours. This is not to the fault of the two nurses we have each night - they show up pretty faithfully and I get sleep because of them :) - It is a management issue. I literally can't tell you how I despise getting a call from the company because I know I will have to repeat myself for the trillionth time knowing that they still won't understand. Knowing that in another hour or so I'm going to get a call again needing to explain AGAIN because they STILL don't get it. Knowing that they will call at the end of the day saying "Sorry, we can't find anyone." Things that we have scheduled and have been scheduled for a month with them are having to be cancelled because they call the day before (or day of!) to say they can't fill it.

On the plus side, homeschool has gone quite well. The kids have had pretty good attitudes and learned a lot. God has been very good in time going by quickly and giving me just enough for every day.

Also.....




Fall is here!!!!!


Yes. I know it's poison ivy. But it's still PRETTY. 

Ben, my dear, I love you. But if you ever leave me again I will kill you. :)

Have a lovely Monday, everyone. I need to start my day by catching crickets that are apparently infesting my house. 

As a side note, you know you're a mom when you find THIS in your tub.

Friday, September 14, 2012

Your kisses are sweeter than honey.

Hello, all. It's been a little quiet on the homefront here. And by 'homefront' I mean only this here blog. My actual home front has been quite busy. You see, we started school on Monday.

Big mistake!

And by that I mean the idea of homeschool altogether. No, not really. :) Despite the constant groanings, attitude adjustments, and schedule (yuck!) it hasn't been too terrible. I've even had to set the kids straight a few times. Get it?... because I was talking about myself..... .......

In all seriousness, I was desperately hoping to avoid attitudes until at least the second week but they showed up in full force on Monday morning. Nothing a daddy talk couldn't resolve though and the rest of the week was much better. 

I really believe that deep down I enjoy homeschooling. It's honestly not even that deep down that I have to search. I know why we homeschool. I like that we homeschool. I even really want to homeschool. But in truthfulness, those moments when I'm battling back talk and beeping and dog walking I wish all the way to my bones I had shoved those kids on a bus that morning and been done with it. "See ya in eight hours, kids. Momma's gonna go get the 'special' coffee." But I suppose it is that way with every mom facing this thing or that.

All that being said, our first week was a great success and I hope the second goes just as smoothly. I look forward to a great year with these kiddos.

Rambo has also been equally as time consuming. He's crawling. Enough said. I am CONSTANTLY readjusting and silencing and...... the list goes on and on. He's also been battling tracheitis. I said a few posts back that he was going to the doctors because of that and needing to be on the vent more than usual. 

Pointless.

It was pointless.

The doctor had him on the wrong antibiotic.

For 10 days.

So now he has started what is hopefully, and SHOULD be (according to his pulmonary doc), the right medicine. Everything should start to clear up soon.

And with that being said, I am going to bed. It's Saturday tomorrow and I get to sleep in get up at the same time I do every morning.  Happy sleeping.   

      

Wednesday, September 5, 2012

It finally happened.

Everyone said it would happen.

Everyone warned me.

They said it happens to everyone. And I believed them. I really did but I started thinking at this point we had a system that worked and maybe we would skate through unnoticed.

And then it happened. His trach fell out.

His trach fell out!

Of his throat!!!

He didn't even pull it out it just fell out! The velcro in the back of his trach ties somehow came unattached and out it came. I have done innumerable trach changes, but those are planned. Those are nothing like looking over because he's coughing and seeing the trach and ties hanging to the side. 

*shivers*

Thankfully, because people had warned me, I was mentally prepared. I had run through over and over again in my mind what to do in that situation but I'd be lying if I said that I didn't have a serious case of the shivers immediately following. Thankfully it went right back in with no issues. I don't even think he desated.

I also don't think I'll ever trust trach ties again. I've already checked his new ones at least 5 times in the last 15 minutes just to be sure it's all still working.       

And that's my story for the day. Hopefully never to be repeated. 

Saturday, September 1, 2012

And that's the way the cookie crumbles.


Must be a nice way to spend a Saturday.

In truth, I'm not too far behind. I did only just get out of the clothes that I've been wearing since yesterday morning. Although that may not have been as much of a choice as it was the fact that time eludes me.

Rambo has been feeling better but the past two days we've been keeping him on his vent during the day because he needed the pressure. 
Unfortunately this keeps him in a close vicinity to the bed because of the tubes. It also keeps me in the house (more so, if that's possible) since it's all a little more precarious. 

The good news is that today he has been off the vent since he woke up and doing well! 

The doc put him on an antibiotic the day we took him and I just got a call about the results of the culture. Of course I missed it so we'll just have to wait until Monday.

************************************** 

 
Bubbles. That's what's up. Ignore the sheet hanging up in the doorway. A necessary nuisance with the air purifier. 


     
Keeping kids and dogs entertained for at least 4.5 minutes. 

*****************************

  
Helicopters. Also what's up. 

  
Because sometimes you have to be entertained at someone else's expense.

And at least it wasn't Theodore's this time.


  
**********************************


A new bag from an old friend. Thanks, Renee!!!

  
It matches his sign perfectly. :) 

It appears to be shaping up to a not so bad weekend. 

I wish you all a lovely labor day weekend. If any of you want to drop off some delicious barbeque leftovers since I'm stuck here not being able to attend any parties, I'd appreciate it.
Have I guilted any of you into it yet???  

**last minute edit- I should probably have said that the person flown out was not injured severely, it was more precautionary as far as we know**