Rambo's Rampages...

As much as we are no longer dealing with some of the same challenges we were last year, I am convinced it has only made room for different ones.  This, for instance: is our biggest problem now. How in the world is this going to work when he is crawling? He already almost pulls his equipment over. It'll be interesting, that's for sure.  Also napping is something that he doesn't really do. About every 4 hours he'll sleep really hard. For 15 minutes. You MIGHT get 20 out of him. What can you get done in 15 minutes? That's barely enough time to get a cup of coffee and put your legs up. Sure, there are plenty of chores that can be knocked out in 15 minutes or less, but what kind of fun is that?  Again, I'll choose to count my blessings. Which leads me to the second part of this post.... kind of. I was reminiscing today (I guess 'reminiscing' can be used when you are talking about bad memories... there is probably a more accurate word. Not ...

We are getting the heck out of Dodge! That's right. As of tomorrow, JHH will be a mere memory in our lives. Well, ok, not exactly. We'll still be there quite often for appointments, check ups, etc. But it will no longer be our home. Of course, our home still won't be our actual home yet either - Mt. Washington will be. Yes, Rambo is moving on up! Broken heart, no biggie. Messed up lungs, whatever, he's got this. He's got tiger blood. He's gonna wrap both arms around Mt. Washington and love it violently through violent hatred. And then we'll be home in no time. There was literally weeping and gnashing of teeth in the NICU today. Nurses were sobbing, babies were wailing, everyone was in an uproar. Chaos was rampant - their hero is leaving. And there Rambo laid, asleep, completely untouched amidst the havoc he was causing. He exposed them to magic and for that they will forever be grateful. I do have pity already for the nurse that's going to get stuc...

One hundred. What's so special about that number, you ask? Well, I just so happen to have an answer. For starters, it's the number of vocal sounds that a cat has. It's also how many zeros you need to make a googol, the number of surnames accountable for 85% of the Chinese population, about how many earthquakes occur in a year that cause damage, and the dollar bill that Benjamin Franklin is on. It is also how many days old Rambo is today. One hundred. I can assure you this is not how I thought I would be spending one hundred days of my life - ever. I can also tell you that they have been the best of times and the worst of times. We've encountered everything from him literally almost dying right in front of us to watching him blow huge snot monsters out of his nose. The respiratory therapists love it - seriously, they do. They use whats called a 'neosucker' to suck mucous out of the mouth and nose. I'm not gonna lie, once you've used it enough it becomes...

Today was not a great day. Rambo has yet another infection that they believe is staph of some sort. They are still waiting for the cultures to grow and specify kind then species, then blah blah blah. Anyway, he's on a gammit of antibiotics again with an IV in the OTHER side of his head - bye bye more hair. They believe the infection came from his PICC line (it's a more permanent IV). That's 2 for 2. The last time he had a PICC in he got a blood infection. Here's the real kicker - they need to put ANOTHER one in to give him fluids and medicines because a regular IV can't handle all of it. Vicious cycle?? I think so. I got to see him struggle and be in pain for the majority of the day today. Lucky me. He got moved back to the warming bed because he was actually cold. His temp went from very very high to very low (See, I told you this would happen. It's not quite anthrax, but it's the same point.) He was in a crib for a whole 3 days. The problem with the warmi...

I made it. I hope no one was worried about me. Nicholas Cage never showed up (I'm not too upset about that). I got my hazlenut latte. And it was good, the nurse didn't lie, but I'm still undecided on whether or not it was worth the trip. I most definitely got lost and wandered up and down two sets of stairwells for a while. Then I roamed the third floor for about 10 minutes before finally breaking down and, yes, asking directions. I generally would not have done that, but by this point I was almost ready to call it quits and skip the coffee altogether but my stomach was yelling at me and I'm too stubborn. So I got a nurse to escort me. She didn't mind. I think she felt bad for me - she definitely would have if I had shown her the pitiful picture that was my so called map. An escort, several guard stations, and a parking garage later I end up at The Grind. The line is l-o-n-g. I'm tired, hungry, and had just worked my butt off to find this place - so I stay. And,...

...be the top scientist in your field or have mad cow disease? These are they type of questions I feel like we've been faced with throughout this whole ordeal. Except there's never an obviously better choice in our case: mad cow disease all the way - I hate science. Would you rather your son have his heart surgery now or live in anticipation of it for the next 4 months? Would you rather have your baby at home and deal with all the sleepless nights or have him in the hospital until that stage is over? Would you rather actually feel like a mom with him in the NICU or have him in absolute constant great care in the PICU but feel disconnected? Would you rather keep trying to extubate with the hope that it will work this time or take the step of a tracheostomy? Would you rather all be living together at home or living away and apart so you're dodging the outrageous electric bill that winter brings? Of course, most of these scenarios we never really had a choice in. I...

You know you're in for a real ride when you get a call from the doctor (on Christmas Day) saying they had to reintubate your child. SECOND emergency intubation - check. I bet you're starting to wonder how many times this poor child has been intubated and extubated?? Well, today marks try number 9 without the breathing tube. 9. Seriously. I could give you a play by play account for the 7 tries in between but I won't. Let's just say Ben could intubate or extubate anybody any day of the week now. But I'm getting ahead of myself. Back to the NICU on Christmas Day: After many days of being baffled by a baby the doctors finally all agreed that his issues were being caused because of his heart. Duh. Rambo showed really early on that he was not the typical child with this defect. He wasn't eating and when he was, he wasn't keeping anything down. He was constantly breathing fast, like really fast: 110 bpm was average. And he couldn't seem to do the breathing ...

There are several things I've learned in the past few months. The first of which is even Baja Fresh gets old when it's pretty much your only choice of nourishment at the hospital. I've also learned more information about the heart than I care to bore you with, the names of all the nurses in the PICU and NICU, and that Plan D is always the plan you end up with. My knight in shining armour doctor finally agreed to induce me 2 weeks before my due date. I can not tell you how much this pleased me. And to my pleasure even more, I went into labor on my own the morning I was supposed to be induced. I give my husband credit at this point because at 2am I said "My water broke!" and he hit the ground running. We had to make it to Johns Hopkins since it had been decided it was the best place to deliver so we had over an hours ride and this was my 4th child. Keep in mind, I barely made it to our local hospital with the last one.   Anyway, a pretty uneventful trip and s...