Rambo's Rampages...

Are those not the weirdest creatures? Seriously. They can be in a dried egg for like, ever and then come alive in water. Plus they are incredibly tiny - who even found these things??? And why have they been to outerspace?  These are all questions that plague my mind. But then I realize that I don't care at all. I just know they are in my kitchen and I have one excited kid. If memory serves me correctly (Iron Chef anyone???) I never had sea monkeys when I was a kid. I don't feel like I missed out on anything I just don't want to kill these miniscule fish things that you can't even see because of lack of experience. But if they can go to space and be fine then I think we have real problems if I kill them following the instructions. That'd be a real "Are you serious, Clark?" moment if there ever was one. Now on to things that actually matter.  I'm not sure if my disappointment was clear in the last post about nursing or not. But we went from 98 hour...

We got a call this morning that our appeal for more nursing hours was approved!!!! 14 hours a day!!!!! Our lives are seriously about to change. I am still slightly in shock and am finding it hard to imagine what I'm going to do with all that time. A big big thank you to all those who put in work to make that happen. To the few we told about this process, thank you for praying and and supporting us. I can't believe this is happening!! Ahhhh!! I'm going to go pinch myself again just to be sure this isn't some cruel dream.  Corrected: I just got a phone call 2 hours after the original one. It was most definitely a dream. It was miswritten somewhere apparently. We are only getting an extra 2 hours per day - 14 additional hours a week.  Completely bummed. I would have erased this post but it was already read by some. Boo for us.  

  Once upon a time a little boy got his first approved haircut.     And he loved every minute of it. Can't you tell? He actually did a very good job. But it was definitely tricky.    And he was not happy with her.   Or me. The end. The doctor will be happy to know that the mullet is gone. (I only had two pictures of the back of his head post cut but they were both blurry. I'll get some better ones in the next few days.) It was so sad to take off his bottom curls :( But on the bright side, his head does look smaller so that's a plus. Also on the bright side, he is FINALLY starting to feel better so his mood had much improved today. Mommy didn't have to run away after all.  

My eyes feel like mush. As does my brain. I guess that's what reading 700 pages worth of medical records will do to you. Okay... TECHNICALLY I've only read a little over 300 because the first 400 were lab results. Unfortunately, they mean nothing to me because I have no idea how to decipher them. It only took me about 22 pages to realize that these were going to go on for a while. I've read all of his surgical procedures and notes, almost all of the consults from when he was newborn, and am now working my way through his xray findings. All 300 million of them. I've come up with a headache and a long list of words to look up. And I'm not even half way through yet.  I must admit to being slightly addicted to these since yesterday. I find them fascinating, though. There is a lot of stuff that we didn't know and that the doctors didn't tell us. Maybe it wasn't a big deal but I like knowing all the nitty gritty details. For instance, during his first surg...

One.) Rambo is sick again. Nothing new lately. He has some kind of acute pnemonia so he is back on antibiotics with the hope of keeping him home. It's been a pretty rough week but his fever has broken (for the second time... hopefully for good). His heart rate and breathing have slowed thankfully, but he is just starting to have labored breathing. He's doing a lot of sleeping and we hope that means lots of healing as well.  The thought of going back to the hospital is looming over me. I'm trying to accept it with open arms, but I can assure you that I am just as tired of thinking about it as you are of hearing about it. Two.) Bumper stickers are in!!!!   Check out Rambo's Heart for more info on getting one or some! Do it! Three.) Thanks to my wonderful friend who also happens to be my neighbor, I am getting a pedicure today! Woot! Not that any of you care, but my little toes are going to thank me. I can't wait! Four.) Just as pointless as number three, b...

It's unfortunate, but true.  This boy needs a haircut. It pains me to say it. And it's not just because his doctor mentions it EVERY time we go there, but he really does need one. He had his first haircut before he was 2 weeks old. Then they kept coming over the next several months. His hair has gone from brown to RED to strawberry blonde and curly. And it is still just starting to grow in in certain places the razor visited.  I am loathe to do it. If he were a girl I could pull it up in these super cute pony tails, or put a little clip in the front. But, alas, the curly hair was saved for my son. Figures.  So, without (too much) further ado, and before I chicken out, he will have his first official hair cut. How we will implement this is a whole other issue considering the fact that he can't sit up stable on his own yet. Which means, mistakes could occur easily. I'm hoping to take off just enough to keep his head from looking larger than it already is, but not ...

I really should be doing something productive this Saturday morning, but I just can't bring myself to do it. I'm sure I'll pay for it later when it's 11pm and I'm tired and wanting sleep but my house is a mess.... oh well. Instead I am giving you some fun pictures from this week. Enjoy! New pals. Goose is thinking "I own you." LOVE that look. "Ugh, Ruth, I just want your brownie." Yes- that's the kitchen. He's made it. "Okay... I love you too not just your brownie." I want to go to there. "It's my ball and you can't have it." We had an early day at Hopkins yesterday visiting the cardiologist. 5:30 am is not my favorite wake up time, but we survived with only a few coffee malfunctions and forgetting the suction machine which we had to go back for. (Thankfully we had only gotten a couple minutes away from the house when we realized.) So the results of his echo were... drum rol...

After these many many months, I have come to the conclusion that the medical community has stupid stupid rules. I'm actually extremely frustrated, but trying to smile through gritted teeth as I choose my words carefully. Medical records. Those two words have become my nightmare.  All I want are Rambo's medical records. Getting ahold of someone in the medical record department of the hospital would be a good start but when I call I'm put on hold until they say that I have reached the maximum hold time allowed and need to leave a message.  Really? We have been passively trying to obtain his records for awhile but it kept getting put on the back burner - as though we need one more thing, right? But we recently decided that, yes, we think it's important to have them for many reasons. One of which is that we just plain want them. So I get in touch with my contact person who has never ever ever ever before said anything about them costing a thing. She calls back: It...

Correction - this is where I was and where I'm trying to be. This past week at the hospital, I felt like Rambo:   (minus the adorable-ness factor) All tangled up. Stuck. Nowhere to go. I was living inside of this mess that was so clearly where I didn't want to be. I was trapped in my circumstances. I was letting the worst get the best of me. Just in case you didn't get the drift when I told you all a few posts ago that I hated you. (haha) I was not happy. It was inconvenient. It was lonely. It was bor-ing. Seriously. Plus I had to eat hospital food - AGAIN.  My attitude was horrendous. I tried to smile and breathe, and take it all in and be grateful it wasn't a worse situation, but I stunk at it.  And then.... (I really hate the "And then..." 's) I was convicted like hitting a brick wall.  God has this way of working with me that usually consists of me stewing in my mire and muck...

We're home. We've actually been home since Wednesday night but this is the very first time I've had a chance to sit down at the computer since then.  After Rambo got pnemonia suddenly he had a series of ups and downs. He'd have a good night and then the next night would be awful. He was so dehydrated, he had diarrhea, he was fussy. And then the stuff in his lungs started moving around which is good but always causes the desating and plugs while he (and we) try to get them out. Still chewing on cords. He put himself to sleep like this. Still doing his splits... and getting his IV'd foot stuck outside the crib. Pretty much the only form of entertainment he had. He loved 2 videos. That was it. Do you know how many times I watched those 2 videos??? Not the best quality pictues... they are all from my cell phone... Anyway, all of that mess extended our stay by one more night. BUT now he is happy and home and busy busy busy. I try to remember what a...

Rambo now has some form of pneumonia. I knew our hopes of going home today were too good to be true. After having a night of perfection he had an early morning meltdown. His oxygen had to be turned way up and they are aggressively treating it with nebs and IV meds.... If they can ever get an IV in. 3 attempts and no success. So, because Rambo has gotten us stuck here for at least another day these are the forms of entertainment that I am accepting: magazines of any sort, any type of puzzle activity things, a dance routine in the middle of the room, kidnapping me would be nice, candy and any other kind of junk food, entertaining comments via Facebook or text and anything else to keep me occupied. Please refrain from phone calls- not helpful and I really don't have too much to say- and also books- I don't have the desire or energy to actually put thought into reading something. Maybe I will see you all again if we ever make it out of here. Enjoy your Saturday all you free people....

I said, "Cue the pee!" It only took until about 4 this morning for his body to process what I was saying. But it finally did. His urine must have run off with his right testicle for awhile. The urine returned but the testicle is still missing. Efforts to locate it are in full swing. Every time we come here at least two doctors look for it and then ask us if we knew it wasn't there. This time we cut them off at the pass as Ben said, "We just call it Waldo." Maybe next time I'll get freaked out and ask them how something like that can disappear when it was just there. Just to fool them. That could be fun. Anyway, as I was originally saying, his pee finally took the hint. He is having a better day today. His oxygen is almost back to normal and his heart rate is down. He is still having diarrhea but he is at least hydrated now. He's working a little harder to breathe but that could be due to the fact that because he is 'sat-ing' well we aren'...

This picture speaks adorable and miserable at the same time. Poor buddy :( Now if he would just pee!!

Remind me to never write a post with my iPad again. It doesn't save it. Everything I just wrote- gone. So now you get the boring abridged version. Hopkins. RSV. Dehydrated. Not tolerating feeds. High heart rate. Fever. Not urinating. Diarrhea. IV fluids. Continuous pedialyte. I'm tired and craving anything homemade. Hoping that coins will magically appear in my purse tomorrow morning so I can get a coffee. It can happen, right?? Adorable picture to follow... I hope.