Rambo's Rampages...

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...

He's just so stinking cute. Hi. My name is Amanda Taylor and I am a geriatric self-loather. It's true. It's hard to admit, but it's true. Not so much because of the number of my age but because of the lack of accomplishment I feel. Although, I can't lie, for about 5 years after the age of 17 I cried at every single birthday I had. No, I don't know why. I guess 17 was just a really good year for me. But to that I couldn't even say why - I can't think of anything that happened that year that's of too much significance. I'm just a nutcase. But I do have a point, so stick with me if you feel like going on a self therapy session. As I was saying, I tend to feel like I haven't accomplished much. Not enough to be an adult anyway. The numbers and the accomplishments aren't adding up. So this week when I did actually feel accomplished at something I was really proud. I've been doing the hospital thing by myself for the past s...

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...

The past 2 days have been really good for Rambo. Yes, I've risked it again by saying this. I just can't seem to learn my lesson. But he's been so darn cute that I had to share. He's moving all around, grabbing things, kicking his legs. I laid him on his back and he rolled onto his side. Crazy man. He can't make any noise but if he could he totally would. All the nurses come over to say hi and flirt with him. He's pretty popular. And they all say the same thing. Well, the same 2 things: "Look at that hair!" and "If it's gonna happen to anybody it's gonna be him. Poor boy can't get a break." But it appears the past few days he has caught a break - finally. The only trouble he's had is the hiccups. He's been moved back to a crib and holding his temperature very well. Not too high and not too low. He's being fed and they have actually started compressing his feeds today. Which means instead of continually being fed,...

You know you've been away from home too long when your daughter forgets where the bathroom is. Also when your cats go ferrel again and start peeing on your countertops. That being said, it was a good weekend home. And Ben being home almost full time helps to keep the cats in order. He will chase them down and spank them if needs be. We have three cats. Three. We are the crazy cat people, Lord help me. It's true. Maverick was the original and he's pretty awesome. Well, he WAS awesome and then he got the special 'snip' and turned not so awesome. Who can blame him though? But since we've been gone he has decided he does indeed love us and has returned to his original awesomeness, and quite possibly beyond. Goose is number two. Goose is mine. Goose is the master of his outside world. He will hunt you down. He will win. And when he comes inside all he wants to do is sit in your lap and try to purr. In reality, his purr is more like a very large man breathing very ...

And not so favorite things. For instance, this entire past week or so. It's really weird that now Rambo is 'stable' and is not in as dire conditions as before, I'm more done now than ever. Last night, Ben and I had a chance to get out together for dinner and a concert. It was great. We went to dinner and stuffed ourselves, enjoyed the nice weather and were pulling into the parking garage of the arena when my phone rings. It's a surgeon from JHH telling me they were taking Theodore into surgery that night because his infection had caused an abscess and it needed to be removed. He called it "semi-elective". In that it wasn't emergent but it needed to be done sooner rather than later. Great, thank you. Now I can really enjoy myself. Check off another surgery. That makes 5. Plus 5 infections. That's almost a surgery or infection for every week of his life. That's just a glimpse at what's been going on. Dealing with people, being away from hom...

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...

Thanks to Peter and Veronique Guy and Rebecca - head of clinical customer service, (Yes, Rebecca, I said 'head'. You know you are, don't deny it) I've decided to memorialize Rambo's stay here at JHH by a wall of onesies. This way, when he's grown, he can look back and remember all the 'fun times' we had here. And then, I'll join Hannah in punching him in the face for all he's put us through. So, here are my ideas so far: 1) I <3 steampunk. This one is actually from Peter and Veronique. Thanks, guys, I love it! 2) Rambo's Remedy 3) Bionic Baby 4) I'm a medical anomaly 5) trach baby! 6) FIRST BIG 7) PICU > NICU (just kidding, NICU, geesh) 8) Mobile Chernobyl: Shooting Xray! 9) I heart Friar Tuck 10) zing *lisp* 11) bonzai! bonzai! bonzai! 12) Baja *blorgh* Fresh 13) Delta Garret Delta 14) "Sikerudy!" (security) 15) Rambo > Nicholas Cage - I just threw that in there for fun. But it's totally true. Real...

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,...

Well, little man just went back for his surgery. His face will be tube free for the first time since his first week of life. So no more of this: :) Yay :) And I'm wondering why the only thing on my mind is a Cinnabon cinnamin roll. They are so good. Well, I guess I know why that's on my mind: I'm starving! But still, shouldn't I be thinking about my son and his surgery and all of that? What kind of a mother am I? :) Since my hunger situation is so dire, his nurse has decided to send me on what she's called a 'treasure hunt' for the best hazlenut coffee and scones around. So she says. And if that is the case then why in these 3 months we've been here have I never heard of this place? I'm thinking this is more of a wild goose chase. It involves going over a bridge, through a garage, etc. She even had to draw me a map. I keep expecting Nicholas Cage to come around the corner with a historical document of some sort, decoding something. I'm r...

  O Lord, You have searched me and known me. you know when I sit down and when I rise up;  You understand my though from afar. You scrutinize my path and my lying down, and are intimately acquainted with all my ways. Even before there is a word on my tongue, behold, O Lord, You know it all. You have enclosed me behind and before and laid Your hand upon me. Such knowledge is too wonderful for me; It is too high, I cannot attain to it. Where can I go from Your spirit? Or where can I flee from Your presence? If I ascend to heaven, You are there; If I make my bed in Sheol, behold, you are there. If I take the wings of the dawn, if I dwell in the remotest part of the sea, even there Your hand will lead me and Your right hand will hold me fast. If I say, "Surely the darkness will overwhelm me, and the light around me will be night," Even the darkness is not dark to You and the night is as bright as the day . Darkness and light are alike to You.  For You formed my inward par...

You know that's a scary sight. I feel about today the same way I feel about The Never Ending Story: confused and unsure. It wasn't a bad day, persay. Theodore was fine. It was just.... off. It started when I woke up.  I'm wondering how many of you 'got' my last sentence. Of course it started when I woke up. I slept in until 10. I haven't done that in a very very long time. Let's see, Israel is how old?? Yeah, it's been since about then. I think my body has just taken over. I have slept through alarms for the past 3 nights. I mean seriously slept through them. I don't even remember turning them off. I only know I have dreamt that I got up and pumped (the reason for setting the alarm). Imagine how disappointed I was when I realized it had only been a dream. I despise pumping. But anyway.... I wake up. The day gets started later than I had planned which means I get to the hospital later than I had planned. And they changed the parking! Why? I...

...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...