Rambo's Rampages...

Believe it or not, we actually finally have an almost plan. Ready? It's watch and wait. BUT they did say we might be looking at going home towards the end of the week. I can handle that. He's still on the vent at night but they are going to try him on just CPAP tonight which means he will be getting constant pressure as opposed to that plus extra pressure with breaths. We still aren't sure if he'll be coming home with CPAP via vent but we will see.  Despite all of this, Rambo has been very much himself. Happily playing and learning something new almost every single day.  Sitting up without propping himself with his hands! Um.. yeah... that's him learning to pull himself up. My life is officially over. :) They finally made him braces for his feet. I've only been saying since he was born that his feet were weird. It's all good, he's got them now. And he doesn't mind them too much  as you can see by the fact that he's

Yesterday I was in a bad mood. Seriously, just ask my mother in law. I'm not sure what it was but I think everything caught up to me: 3rd admission to Hopkins, lack of sleep, changing floors, etc. Thankfully, I woke up this morning a bit more refreshed from a good night's sleep and came in to see a happy kiddo. I love that boy's smile. And his hugs!  We just missed the doctors rounding this morning so I'm not sure what the game plan is. Or if there even is one. As of yesterday, because Rambo has now changed hands of who is attending him, the original plan of coming home on the vent has gone out the window. Or at least has been way layed for now. (I'm actually not even sure if that's the correct term, but it sounded right in my head...). The pulmonary doc in charge isn't too keen on the idea of Rambo being home on a vent at night. I'm not sure what that's going to mean in the long run. But for now they need to observe him, collect data, etc and come

"I know, right?" "Yeah, yeah, yeah." "Sure. Sure." "So....." People, please. VOCABULARY. I'm "just sayin' ". Unfortunately, in my many months spent here I have adopted the last of those sayings. I find myself saying "So...." a lot. Also, I'm harkening younger days and really enjoying saying that "I'm j" when I'm jealous of someone. I shouldn't admit that. Too late now..... But really, people, please use words together that make sense and that don't repeat themselves so as to make a complete thought.  NOW, here is the way we (me, Rambo, and my mother in law) have been spending the last six days:    A couple of things: YES - my hair changed color. You know what, I can do whatever I want!! :) The Rambo sign was made by two wonderful people here overnight. They put a lot of effort into it, and it LOOKS GREAT and was a great surprise. And I have added the red headband

It seems the amount of time between hospital visits is getting shorter and shorter instead of longer and longer.  We are back. Us at the local hospital. After a few nebs and a good supply of oxygen he was feeling a little better. I am only smiling for the picture. Trust me, I wasn't exactly happy to be there. Accepting it joyfully - almost, but not exactly happy.  Got a good two full days at home. Then the same ol' same ol' started again. By Friday morning we were using 2 1/2 extra liters of oxygen and Rambo was still sitting in the low to mid 80's for oxygen. There was no way we could meet those needs. His heart rate started going up as well as his temp.  So we found ourselves back at the ER. Thankfully, the same doctor was there as the two previous times. She was immediately on the phone with Hopkins, knowing the routine. We did avoid a helicopter ride, but only because of an incoming storm. He was put on the vent in the ambulance and brought directly to the

In no particular order: I am SO SO SO SO SO SO glad to be home. Okay, that one is in order, but from here on out it's all random. Operation Clean out the Refrigerator must begin imminently. Oh my gosh, my puppy is huge. And also a pain to walk on the leash. Ugh, I forgot how awful our pulsox is. Corner Carryout still has the best subs eveerrrrr. Thank you, Dad, for reminding me :) I'm glad I get to read the kids a bedtime story tonight. Fresh ground coffee is, indeed, as good as I remember. It's possible that was one of the first things I did when I got home. People are awesome and God is good. How could I forget how loud it was here again???? Spongebob annoys me just as much at the hospital or at home.  You cannot deny that Elizabeth Shaw is pretty hardcore. Sweet tea vodka is as amazing as it sounds. My kids are awesome. No, the prior thought did not effect this one- I just REALLY think my kids are awesome. My husband puts up with a lot and som

I'm sitting here at the Children's House writing this morning for two reasons. One, I don't want Rambo to hear. Two, I know once I get over to the hospital I won't get the chance because I'll be busy playing.  As it stands now, we will be coming home tomorrow. Home!! Theodore has been off the vent since Sunday morning and we have been slowly weaning his oxygen down. This morning he is at baseline and doing well. :) The PICU has been gracious enough to let us stay 24 more hours so we can avoid going to the dreaded "floor" as it's called. Considering this isn't Rambo's first trip here and no doubt it won't be his last, they've come to know us quite well. I'm thankful they listened to us and are helping us out. Thank you!!!! For accuracy sake, I must correct what I said a few posts ago about no longer having an IMC. They apparently do have beds that are IMC status. This is only what I've heard. I haven't experienced it ye

... nobody move a muscle because Rambo is taking his most likely only nap of the day. But that's over now so I'll make this fast. Yesterday he was in a MUCH better mood. All he wants to do is move but if you keep him occupied he seems appeasable. He sprinted on the trach collar yesterday and was put back on the vent overnight for some rest. Today he is back on the trach collar and we are hoping to be able to keep him off the vent completely. He is almost back to his normal oxygen levels so it looks like we're closing in.  Also, Ben came back late Friday night so he's been able to help out with the monster. Phew! I'm not alone!! Happy Fathers Day to all you fathers out there! Must go play.

Today was awful. For those of you reading just to keep updated with Rambo, I'll spare you from having to read this entire post. He is fine. No setbacks. On the whole, things are looking good.  But today. Oh, today. Rambo, or as I'll refer to him in this post as Nightmare, was exactly that. My morning started by walking into the room of a purple nightmare. He had somehow disconnected the vent, and although it only remained that way for maybe 30 seconds he was already a dark purple mess. And the day only got better from there. He was HIGHLY agitated all day. I mean, ALL day. I got there at 9:30 this morning and couldn't leave his side until 8pm. Even then he wasn't content.  I tried everything. Even a dose of Valium didn't help. He was breathing fast and tugging a little hard due to the fact they are weaning his vent. Things are going pretty well there, but they just got a little ahead of themselves. It's taking more work for him to breathe and he isn't co

I really don't have any direction for this post... I just felt like writing. Warning: this post could quite possibly be the most boring, bunny trailed, sporatic post yet. Or as Ben would call it - a look into my brain. There have been a lot of thoughts running through my mind today. Everything from Rambo's nurses to an unfortunately clogged toilet in my room. How, for the third day in a row, I'm aware of how extremely thankful I am that Rambo has remained a relatively low key patient. I walked into the PICU today and saw a room filled with nurses and doctors and the after effects of an emergency of some sort. People talking amongst themselves, doctors making phone calls, equipment being moved around. And amidst it all I saw a little baby laying on the bed in the middle of the room. My heart instantly sank thinking of what the family was going through, what the baby was going through, what could possibly have gone wrong.  It's weird when I come across that sort of th

Not sure if they're big strides. Or little ones. I'm hoping they are little strides that will make a big difference. Hoping today was the start of the good stuff. Today, Rambo smiled. And played.  Which is a far cry from...  Where he was two days ago. Picking his nose. He just discovered that. His oxygen is still turned up. The vent is still giving him high levels of pressure. They slightly weaned the settings down overnight - I know the following may mean little to nothing to most of you but I want to give you an idea of how slightly I mean when I say 'slightly'. They went from 22 over 8 to 20 over 7. (PIP/PEEP) I never got a good idea of how that worked overnight but it was not working for him this morning. He was HIGHLY agitated and was desating the worst we have seen him and taking extra long to recover. So the settings went back up. But after a 4 hour nap and some Valium he woke up in a great mood. He was breathing fast again today, unlike y

Today I will use the word 'fine' to describe how things are going. Not great, but not horrible either. I'm stretching to find some actual good news to report. I suppose the fact that things aren't worse today is a good place to start. And, on a whole, his breathing has been a little slower.  Other than that, I'm afraid things are looking just as...... stagnant. He is still working hard to breathe- it's actually awful to watch. His heart rate is up again and his sats are sitting low. The plan is to hold fast, keep the course. What else can we do? He's been chock full of Tylenol and   Valium to keep him comfortable and calm. He's got restraints on his arms so he doesn't pull off the vent, but that only irritates him. We're trying to keep him happy and entertained, but that only goes so far for so long.  We got lots of pictures today so I'll be sure to put some up as soon as they get downloaded. I don't see us going anywhere for quite s

So. I'll start with the good news. For the first visit since we got out of the hospital over a year ago we are off precaution. That means we do not need to wear the masks and gown and gloves any longer. Rambo doesn't have a contagious viral infection. In fact, as far as we know he has no virus at all. The only thing we've come up with is some type of non contagious tracheitis. I am happy to say that I don't have to suit up to go see or comfort little man. Also, his heart rate has ever so slowly been lowering. The vent has been taking some of the stress off his body and allowed his heart to rest.  Now for the, I won't say 'bad news' but, not great news. His pnemonia is worsening. Apparently we got to the hospital just in time. It started with just his left lung being completely whited out. Yesterday, even though he was on the vent, he started tugging and looking not so great. Another xray was taken and the pnemonia has moved to his right lower lung. His v

This was the view from the helicopter yesterday as we left the shore for the second time by flight in three weeks.  I did get to ride with Rambo this time. So that was pretty neat. Considering he was headed back to Hopkins.  I must admit that the view from the air was pretty nice - while on the shore. Once we got over the bay it got a little less scenic. I took some pictures of that too, but they just aren't as pretty.  Why are we back here? Pretty much for the same reason. Theodore was doing really well since we got home on Sunday. However, on Wednesday his temperature started creeping up. Each day it went up a little bit more and by Thursday night he had started breathing slightly heavy. We knew we had a pulmonary appointment on Friday and thought they would do an xray and maybe change his antibiotic due to his new issues. Unfortunately, we didn't even make it to that. Friday morning he turned downhill suddenly with fast labored breathing and high heart r

To the everyday. To the normal. To the noise. Day 2 of being home and I'm feeling pretty good. I can't begin to describe how good it feels to be with my family again. To make my homemade laundry detergent. To smell homemade bread. To drink fresh coffee made from freshly ground beans. To see my kids rooms (which just so happen to be terribly clean thanks to my mom in law - and my kids for keeping them that way.) To see their smiles and hear their quarrels. To see my sweet puppy who I was convinced wouldn't remember me (he did). To go to sleep and wake up in my own bed next to my husband.  Day 2 and I'm slightly fighting the feeling of being overwhelmed. Not by routine this time - mostly because we are done school for the year! Woot! But by the noise. I forgot how loud all of Theodore's equipment is. I've forgotten how to tune out the constant humming. Therefore, talking has to be louder, the tv has to be turned up. The noise that three little children can

HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME.  HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. home. HOME. Yes, we finally made it. I'm so glad to be back on the shore I can't even tell you. For now, Rambo is doing well. He's glad to be back home on the floor rolling, scooting, playing, etc. I'm hoping to be Hopkins free for at least a good six months if not more. We shall just have to wait and see.  I suppose, considering how sick he was, a two week stay isn't that bad. The PICU doctor happily said the day we left intensive care "We fixed him!" Yes you did. Thank you.  

I've been going about this whole thing wrong. See, I thought people came to Hopkins for top of the line medical expertise and quality of care. Silly me. No, apparently people come here for the private rooms. Or so that is what was clearly explained to me yesterday.  The new Children's Center is nice. There is more room, no matter what floor you are on you are able to spend the night with your child if you wish, things look cleaner, it's more up to date and what you would think of when you think "Hopkins". The only problem is that a few things were over looked. Silly, little things. Like safety.  I won't bore you with all the details about why this is so. Or about how even the nurses don't like the new set up. I will, however, bore you with what I found to be absolutely incredible. I said a few days ago that Rambo was finally moved out of intensive care and into intermediate care. I was wrong. Hopkins no longer has any form of intermediate care. It goes