Rambo's Rampages...

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 ...

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. ...

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...

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 ...