Rambo's Rampages...

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...

Prepare to be amazed. What you are about to read could quite possibly be one of the most defining moments in your life. Ode to Rebecca - head of Clinical Customer Service PICU Rebecca you are really sweet. You give me jolly rancher treats. The PICU was your stomping grounds But you braved the NICU on your rounds. Coffee, water, a rocking chair, If you could get it, it was there. (Except, of course, our vacation pack. Yes, we are still waiting on that.) We'd sit and while away the time. You like the Ravens - what a crime! Rambo loves you, he tells me each day. A broken heart he sends your way. You were something special we always knew. And proof - a coffee card on cue!  You gave us Vince Lombardi's trophy Now we give you Rambo's Remedy To you and yours we bid adieu. Goodbye First Big, Goodbye PICU. I know what you're thinking: "How does she do it?" It's a gift really.

Well, considering the NICU almost killed my baby, I'm pretty happy to be back upstairs.The PICU isn't generally the place you want to be because it usually means you aren't in the best condition. But in our case, I'm happy to be here. Even if there is a clumsy nurse or two. :) Last week Rambo was doing extremely poorly and no one was sure what had happened. It seems to be the general consensus that the NICU created the perfect storm. Weaning him off his narcotics, trying to avoid withdrawl, extubating AGAIN was all just too much for his little body and too much strain on his heart. I'm not trying to take all credit away from the NICU and I definitely want to give credit where it's due. The nurses and nurse practitioners are great. I'm thankful they kept Rambo alive when I couldn't have done that on my own. But see if I don't avoid that place like the plague from now on! I said before that Theodore seems to like it in the PICU and I'm thinking ...

This morning as we were getting ready to go to the hospital and meet with the surgeon I realized that I was not at all ready for today. I wasn't ready to see Rambo looking sick or abused. I wasn't ready to see him all cut up again. I wasn't ready for anything. Nonetheless, today was here and his surgery was happening whether I was ready or not. We sit down with the same surgeon who has worked on Rambo before and you can tell he'd not pleased he has to do this one. He tells us straightforwardly that Rambo has a 50/50 chance at surviving the surgery. And if he does survive he will almost definitely be on ECMO - a heart lung bypass machine. I have seen this machine on several children in the PICU and hoped never to see my child on one. You have to be completely sedated and paralyzed and each day you are on it is a day closer to not getting well at all. I had a feeling that this was coming so after he told us that I tried to prepare myself for it but to no avail. I just c...

Apparently Rambo feels the need to live up to his name. Maybe that wasn't the smartest move on my part. But whatever the case, he is going to be having his third heart surgery on Monday. I keep whispering in his ear that this wasn't the plan but I don't think he's listening.  The good news is that his heart rate has slowed down and he is not working too hard to breathe. At least not while he's sleeping, which is what he's doing most of the time since they put him back on the narcotics. I'm sure he's having fun riding on pink elephants again. Somebody better be having fun because I can assure you that I am not.  Today we will be going back up to the PICU. My love/hate relationship with them can commence once again. I'm not sure who is looking less forward to our return: us or them. :) In other news, I ate at Baja Fresh for the first time today in weeks. It was still too soon.  

"Shooting xray!" You hear those words and you will literally see everyone in the room up and moving towards the door and out into the hallway. Parents forsake their children. Nurses forsake their patients leaving them alone and helpless to absorb all the radiation we're so desperate to avoid. Thanks for taking one for the team, guys. I really think by the time we get home Rambo will be the kids own glow in the dark toy.  Ahhh, life in the PICU.  We never expected to be in the PICU as long as we were. We didn't expect a lot of things. But I definitely think we left our mark wherever we went. Whether that's a good or bad thing is left to one's own opinion. Going with the flow; rolling with the punches; whatever you want to say, we are experts at it now. Why not make it enjoyable?  Our days pretty much consisted of waking up, walking to the hospital, going to the 7th floor and entering First Big. That place will always hold a special spot in my heart. Imagi...

And by 'neighborhood' I mean PICU. Talk about chaos. Wonderful wonderful chaos. I miss that place. But when I first walked in I was totally intimidated. And that was on an 'empty' day in the unit.  It's a weird sight to see your tiny baby on an adult size bed. And weirder still when that entire bed is covered in equipment just for him. As well as his body being all geared up with tubes and wires and barely an inch to spare. It's amazing what can happen to someone in 6 hours. Our sweet little Rambo had become the bionic baby.  At this point in my head I'm pretty much just hearing static and nothing. I was finding it hard to even form a sentence that was worth anything. (I know what you're thinking about the two prior sentences, and yes, I know what I just said. And yes, I mean more than usual.) I'm used to having a 2 week old at home: watching him sleep in his bouncer, patting his back when he's crying, picking him up, feeding him etc. No...