Rambo's Rampages...

It's 12:16am and I'm definitely starting to wonder where the nurse is.... I mean, getting home from the hospital yesterday only to find out that the nurse is unable to come in on a night she is scheduled to work every week is bad enough..... but really... two nights in a row??? When I have an electric blanket waiting for me upstairs?? Please don't let this be so!! 12:21am and she just pulled in. Thank God!!!! Good night all.... 

followers fest (Only a day late....) Things I Don't Understand: Episode 2. Fall Edition Shorts with tights Snow in October (like when you're not in the extreme north or south) Small children dressed in freakishly scarey costumes. (Sparing you a picture on that one.) This post was brought to you in part by

I have decided to start a new series. I don't know how often I'll add a new 'episode' but as they come to me you can rest assured that I will. Please feel free to add anything you come up with as well. Without further ado -  Things I Don't Understand. Episode 1. Mother's who rave over the boys in Twilight The whole space/time continuum stuff Water chestnuts Tattoos on your calf Babies who don't go to sleep when they are tired This post was brought to you by

I've been thinking. "Uh oh," you say. Just here me out on this one.  I think I've finally decided that I like being a stay at home mom. You're thinking, "It only took you 7 years to decide that?" Well, yes... and no. Because there are days where I would do ANYTHING to get out of the house. I seriously mean anything. Forget homeschooling, leave Rambo behind, stay as far away from laundry as possible, no worries about cat puke, no floors to sweep, no bills to pay, no meals to make just run Run RUN! Okay, after writing all that I'm now thinking that kind of sounds ideal..... What was I saying before??? Oh right... the whole 'I like being a stay at home mom' thing...... So, as I was saying, I have decided I like my role as a stay at home mom. Here are the reasons why (as I now have to convince myself all over again) Who really wants to get up, get dressed and be ready for work at 8am? And for some nurses and police officers and the lik...

I feel victorious!  It's not because there was a helicopter with a search light right outside my window last night circling the area because they were looking for someone. Victorious wouldn't be the right word for that. Maybe...... concerned. It's not because I finally caught the movie 'Soul Surfer' from the beginning and right at the climax (which sneaks up on you, by the way, because there are A LOT of surfing scenes in that movie) some random lady comes over to talk to me for 1.5 minutes and I MISS THE SHARK ATTACK. In case you didn't know - that's the whole point of the movie. Victorious wouldn't be the right word for this either. Defeated is more like it. And I'm pretty sure the words, "Are you freaking kidding me???" slipped in there as well. It's not because the family in the room next to me has a child that wakes up at 7:47am every morning screaming at the top of his lungs.  And it's definitely not because I had the ...

In the words of Gwen Stefani "Whatchu waitin', watchu waitin', watchu waiting foooor?" Answer: The doctors. What else would we be waiting for? Apparently the waiting game is fun. I have to assume that's the reason for all of the sitting and waiting anyway. And I'm sure it probably is fun for those we lie in wait of. For the person doing the waiting, however.... not so much.  Here's the way it plays out to us, the aforementioned helpless wait-ers: Secnario 1 Wait-er: *wakes up early* I better hurry and get to the hospital. I know the team rounds early on weekdays and I don't want to miss them because they may not come back for the rest of the day and I could possibly go all day without seeing a single doctor if I miss the rounding. I'll get my coffee and breakfast after I see them. Those we lie in wait of: *drinking coffee, reading charts, 'discussing patients', drinking coffee* An hour passes  Wait-er: I'm really glad I di...

get out of the hospital Okay... that's a given. Here is the to do list of things that need to happen so we CAN get out. say it with me - get oxygen back down to normal. This we are working on. He was up to 40% for part of the night but is now down to 30% and doing well. echocardiogram tomorrow chest xray tomorrow (Both of the above have to look good, obviously. We can't just have them done and then go home if they look any worse. So maybe I should say 'good results on the echo and xray.') change medications over to Gtube intsead of IV and make sure he tolerates them well overall progress in health The doctor today said that this is a slow supportive role they are playing; making sure he is completely over it this time. With his already weak vulnerable airways they need to be sure this has moved out so that we are not back here in another week in another bad or possibly worse position. So as far as a timeline goes - there isn't one. I don't fo...

I finally figured out why Rambo made us come back here. Yup. Apparently he hadn't quite figured out Cat's Cradle and just HAD to get it right. Well done, son. Well done. Next time just let me in on it first and I'll hand you some yarn or something. Spare us the trip to two ER's, half a days time, and a weekend in Baltimore.  Oy vey, Theodore. It appears the common cold is Theodore's kryptonite.The theory is that his lungs, although better, never fully recovered and the right one 'clogged' again. Thus, the heavy breathing and increased oxygen requirement ensued. He can deal with all sorts of viruses that are 'worse' but hand him an ordinary cold and his body shuts down. Does this mean he is extra-ordinary? I think difficult is more appropriate.  What does this mean for us? Lots and lots of hand washing and time at home. So basically, nothing is different.

It's official. Shine your shoes and load your pistols: we are back at Hopkins for the second time in exactly two weeks, for the same exact reason. Joy of joys.  We just missed the pulmonary doctors this morning so we are waiting to speak with them. He started breathing heavily yesterday morning and was acting miserably. Again, we were told to take him to the local hospital where he would then most likely be transported to Hopkins. He was actually doing much better by the time we got there, however, his xray showed something going on in his lungs. No one is really sure what caused it to get worse, or what is making this time around so difficult to get over.  Nothing new. When Rambo was born there was always a question in the back of my mind whether or not he would see his first birthday. I'm starting to think he's testing me to see if I'll let him live until then!! This boy is high maintenance.  But, hey, as Ben would say "There's nothing like the smell ...

Firstly I would like to give shout outs to my girl Sarah for the lovely new header for this blog. Amazing! She has both the intelligence and skill, which I know nothing of, to create it. And somehow, even being the mom of 3 under 3 she found the time to do it. Thank you, Sarah!! You can check her and her life out  here if you wish. :) Secondly, my mom is having back surgery tomorrow morning so I would appreciate a little prayer for her :) Little man celebrated his 10 month birthday 2 days ago. And by 'celebrate' I mean did pretty much what he does every day: tries to take over the world. He is still capturing my heart with every smile - little stinker. (On a side note, Ben WISHES he held that power. Too bad! Ben, please refrain from commenting: I already know where you would go with this.) Rambo is getting very strong on his belly and if that tube weren't in his way he would be rolling over all the time. He is still really junky and most days I feel like every time I...

It appears I momentarily forgot who this blog was about. I'll give you a hint: it's not me. So, I shall return to the subject at hand:Rambo. Good news: His weaning process is complete! He is now off the methadone and clonidine!!! Two less medicines to give him.  Currently his antibiotic is making him poop A LOT. I could literally change a dirty diaper every ten minutes. Not that you care, but it's out there non-the-less. He is so active!!! He is passing toys from one hand to another, reaching for all sorts of things, entertaining himself. Happy happy joy joy. He also lays on his back and arches it so the only things touching the ground are his head and butt. He can scoot himself up while laying on his back, therefore the bumper on his crib has become very handy.  He's got this new thing with blankets where he likes to hold onto them while he puts himself to sleep. It's the cutest thing ever.  I told you it was cute. He pulls the blanket up to his f...

I don't know what my problem is. Ever since we got to the hospital all I've wanted was to be home. I hate being away from my family. I hate living in a hospital.  But now that I'm here....... I'm not sure if I build up in my mind how wonderful it will be to see the kids and husband again. Or if I forget about all the normal everday ridiculousness and responsibilities there are. Or maybe I was away just long enough to get used to life that way and now it all gets changed again. I don't know what it is. All I know is that I haven't even been home 24 hours and I'm already FRUSTRATED.  The word that has described my feelings in general since we pulled in the driveway: chaos. Maybe it's because it is slightly chaotic to get Theodore all set up once we get home. Maybe it's because the kids want to tell me and show me everything they've done since I've been gone as soon as I walk in the door. Maybe it's because, even though my house was ...

Some people are weird. Or maybe not weird, but.... unique. I mean that in the most loving way. And I'm sure that there are some who would put me in that category. I accept this. But it just makes me laugh sometimes at things people say.  I'll give you my most recent experience. For two days Rambo was getting respiratory treatments every two hours. There was an RT who absolutely fell in love with him. She had the best time holding him and playing with him. She doesn't have kids - she has cats. Lots and lots of cats. She actually rescues them, nurses them to health, and then finds homes for them... some of them. Noble cause. Good for her. And it may not have been WHAT she said as much as HOW she said it - with such dedication and reckless abandon. She has a certain cat who is an apnic monitor. Really. He can sense when someone has stopped breathing for a minute and will hit them so they start again. Now, cats ARE interesting creatures. I'll give them that. Capable of al...

Please, don't everyone jump in at once and try to stop me from saying that.... Anyway, for those who didn't already know or suspect.... I think it might be true. Ben is probably recounting all those times I said something before I really thought it out (oh.. thaaaaat's why they call it an island...) But, on a whole, I have tried to stand firm on the fact that I am not an idiot. It may have all been for naught. I have done my very best to avoid saying anything about the word 'home' or 'going home' or 'doing well' or any variation thereof in front of Rambo, let alone TO him. I even spoke in pig latin, people. Okay, that's how serious I was. You would have to be an idiot to do that after all we've been through. "Ahhhhhhh," you're saying to yourself, "I see where she's going with this." I.Am.An.Idiot. I find myself talking to Theodore about how we can't wait to get home, and how I know he's excited. ...

Seriously, I can guarantee it will be a waste of your time. It's purely an unorganized mass of random thoughts I've had today. There must be SOMETHING you can do that's better than this. ANYTHING. If not, then you must be in the same place I am: bored out of your ever loving mind. Rambo is finally sleeping in his crib. He had a slightly miserable morning and looked so pitiful. He is working on getting all that stuff out of his lungs and it is wearing him out. But now that he is fast asleep I find that I have nothing to do. This is a good thing. Also, his xray looked better this morning and the tentative idea (I no longer use the word 'plan'. It's pointless.) is to go home tomorrow. Hold your excitement. Lets see if it actually happens first. Let's begin: I love hot peppers on my sub from subway but they must penetrate my pores because I feel like I walk around smelling like one big pepper. This still doesn't stop me from getting them. How do yo...

...when you stick me in a room by myself with no tv for too long - CHANGES!!!  I have been thinking that it was time for some changes on my dear blog. If you know anything about me, or more specifically my hair color(s), you know that I can't keep anything the same for long. That being said, generally the changes are for the better. For those of you who know me really well, please note that I am not necessarily talking about the fire engine red stage - this is why I said "generally". I wanted the blog picture to accurately depict our journey. Thankfully, he is no longer all strapped, tied, tubed up. We've moved on from there. So I tried to go with something appropriate, but also something that pulled at your heartstrings so you just couldn't resist reading my most recent ramblings. :) Now, if you're anything like me, even if you like change at times you can still be resistent to it. So please take a moment to look at this with a fresh pair of eyes and an...

No. I don't dare.  But I'll give it to you like this: He's ooking -lay etter-bay oday-tay an-thay esterday-yay. Maybe he won't catch on.  It appears the IV antibiotics and steroids are what he needed. And he is looking ell-way. Don't do it! Don't feel sorry for him. That's what he wants you to do with that sweet sad pitiful look on his face. Resist! Okay, even I can't fight this one. He's so coot! Poor wittle baby in da big ol' mean hospidal. Enough of that. He gets an xray tomorrow - hopefully we'll see ogress-pray. His oxygen when he is sleeping was weaned to 40% and he has done ell-way so far. He seems appier-hay. Best case scenario according to doctors is ome-hay in a ew-fay ays-day. Here's hoping, kid. Don't discriminate. Vote pig latin.

And by 'better' I mean worse.  What else could we expect from him?  His xray today was worse than two days ago. This is apparently his new trend. It appears the whole upper lobe of his right lung has now 'collapsed'. This, in turn, is making him work harder to breathe. We were successful in getting another IV in -it's tenuous and position sensitive but it's there. The hope is that he will respond better to IV antibiotics than via shots in the leg. Also, if things get more serious, it's already there in case they need it. They are changing up his steroid. They are alternating between two different nebs every 2 hours with chest PT. In January, I was just told, he tested slightly low for immunoglobulin..la..la..la (I have no idea what the word was) but it has to do with his immunities being low.  To this I say "Duh. That might account for why he has gotten sick so many times." But what do I know? So they are going to test again and possibl...

RUTH MEADOWS TAYLOR haPPy BiRtHdaY!!! You are one of the loves of my life and one of my biggest joys! You are beautiful. You are funny. You are burp crush. You are getting too big! You are smart. You are loveable! You are an amazing big sister. And a great little sister. You are hot and cold. You are a gymnast. You are a princess. You are letting God work in your heart. You make me proud every day. You're an excellent reader. You're an amazing daughter. You are all girl. You are strong-willed. You are strong. You are perfect.  You are six! I love you, Ruth Meadows Taylor. ***You also stink like a pig :) ***

No, we were wrong, things have indeed just gotten worse.  Nice.  Now the story is that we brought him in really early before the infection got bad. So early, in fact, that his cultures aren't growing anything to say that there is an infection at all. But we are treating him for infection anyway because there really isn't anything else to do. At least they're honest..... right?

He is currently bouncing himself all over the bed, fingers in his mouth, with a huge smile on his face. I'd say things are looking up. I should have learned my lesson by now. I KNOW better. Never never never say how well things are going. Because it is now almost midnight and I'm lying next to him in the extend-o-chair ready for bed and he is not a happy camper. He is so tired but just not able to sleep. Therefore I am left listening to gurgles and extremely fast breathing and rustling around and just plain fussiness. No fingers in the mouth. No happy bouncing. No huge smiles. No going home. We moved down to IMC today (Intermediate Medical Care) which is a great move. Health wise Rambo is doing well. Or, so they say. Apparently the even faster breathing and even more suctioning and even more oxygen is a good sign. He will get worse before he gets better so this is the 'worse' before the 'better'. Or so they say. The doctors said his chest xray showed either ...

Well, we're back. Third times a charm.... I guess. Little man got his wishes as we find ourselves back at Hopkins. This time it was via an ambulance ride so.... there's that...I'll start at the end by saying that he is doing fine now. Happy as a stinking little clam surrounded by all the nurses and doctors who love him so.  I started noticing him needing to work to breathe a little on Wednesday afternoon. So, of course, I did all the normal things we do when that happens - nebs, chest PT, increasing oxygen. He leveled off, except for the oxygen increase and was doing well for the rest of the evening. Then shortly after 11pm he started having really labored breathing. Even when he was at rest his heart rate was up and his oxygen saturation was down. You could watch his whole body go up and down with each breath and he was breathing faster and faster as time went on.  Our nurse kept a close eye on him all night and we went to bed knowing we would most likely be woken up t...

That was the second dirtiest diaper I've ever changed. Ever. I'll spare you the details, don't worry. But I'm going to let you in onto why I sit here baffled and why this change, out of all 4 children, takes the cake as worst diaper change ever.  It starts out the same as always. Normal day. Normal time for diaper change. But as I'm getting the wipes and new diaper ready I start pondering why every time I change Rambo's diaper I say the movie line "Korben! Korben, my man! We all gonna die." Not sure when this started, or why, but it comes out every.single.time. I have at least graduated from saying "Are you tinky??"  I admit, that was a low point in my life. When you literally can not make yourself say 'stinky' because it always comes out 'tinky' you know you have crossed over into "Momland" with little hope of ever returning. I'm proud to say that is no longer the case.  I can't officially say that I eve...

How does he expect me to stay mad at him when he looks like this??