Rambo's Rampages...

...it was a ginko. (just taking a poke at my mother in law.) Basically everything is up in the air. Our insurance will not cover our stay at JHH for much longer but we cant go home yet because we don't have a vent. And the intermediary place we were going to go to may now not have a bed available. I don't know where we'll go but I have a feeling I may never see home again. In the meantime.. here are some cute pictures of the little man. Including one of his new haircut.

Well, it appears we will be here for another 3 weeks or so. Rambo is doing well but it's coming down to coordinating the home vent stuff that is holding up the works. I, for one, am glad just to have an idea of a time frame and also that I am not the one tying up all those ends. So to figure out what in the world we'll be doing for the next three weeks, other than the obvious of occupying this child, I thought I would give you a nice compilation of what's been going on here to do just that. Here they are in no particular order: Rocking, rocking, rocking, rocking......... Working on and FINISHING crosswords. With our ( mine and my mother in law's) knowledge and my stand alone spelling skills, we' re pretty much unstoppable. $.99 soda refills. Singing any random Nirvana song that comes to mind. As well as humming a childrens song that Max insists on singing 100 times a day to Theodore. Writing this here blog- luckily for you. SpongeBob, Spongebob, SpongeBob Fo

If you don't know the answer to that question consider yourself blessed. We are still in the PICU because there has been no room for us in IMC. We are told that today might be the day. I am certainly hoping so. Not because I love the floor so much but because Rambo is more able to move around and play when he is there. As is the way it should be. I'm just getting a wee bit tired of the holding pattern. There really isn't a lot to report. Theodore has, for the most part, been a pleasure. His monitors, on the other hand, have been famously annoying; beeping with every bounce and turn. Poor Ben got to go home to a flea infestation and what appeared to be a wild cat exhibit. Which is why cats are bad pets. The second you leave they go ferrell in the name of revenge because they are prissy little beings. It only took Ben about four days of constant bombing and vacuuming and washing to finally be able to walk through the house without a barrage of fleas attacking him. Have I sa

You know, because gauze is plural..... We have made it. And by saying "we have made it" I really mean that we have made it! Not only is Rambo alive but he is acting like himself- 15 minute naps and all. All I can say is thank you Jesus. I wasn't sure that I would see him be his sweet self again, or get his most wonderful hugs and kisses, or watch him belly laugh. And he has done all of those in the past three days. Tomorrow (as long as there is room) Theodore will be moved out of ICU and into intermediate care. The plan, and you know how that goes, is for him to come home on a vent at night. Its unfortunate it took him nearly dying for this to happen. It really is. BUT at least everyone is in agreement now. Until someone from somewhere comes along and decides on a whim they don't think he needs it..... Okay, I'm stopping there. I won't be negative. Don't be negative, Amanda. Really what do I have to be negative about? He is ALIVE and that is enough. Ra

As I look back on this past week, all I can say is "Phew." Its not until after the fact that doctors start saying how bad things were. Not fully anyway. We knew things were bad, it was obvious. But doctors begin saying their true feelings afterwards. After the first four days we heard everything from, "He was in the deep dark woods." to "He really scared me." to "He was incredibly sick." I'm sure that Ben was processing things more quickly than I was. It wasn't really until yesterday that I realized Friday, Saturday, and Sunday they were doing ALL they could for him. They could offer up no more support. Phew. Rambo is still being highly supported. They are allowing him to wake up more each day. They continue to slowly wean the vent. I wonder if pulmonary will actually consider pressure support at night long term for him yet. We still don't know what happened. We don't know if it will happen again. I don't know how much lu

This is going to be short but .... As of yesterday they have gotten Rambo's breathing under control. As of yesterday they have started letting him "wake up". As of this morning he is off the nitric. As of today he has stopped getting the insulin drip. (The picture shows how his poor little toes have been abused- glucose tests every hour). As of tonight he is down to 30% oxygen. Vent pressures are still high. Today they went up a little on his heparin and down on the milrinone and dieuretics. Today I got my first smile of recognition!!! He's not with it a lot but he definitely threw us both a few :)

There's good news and there's bad news. The good news is that respiratory wise Rambo is looking better today. His rate has slowed down, his oxygen requirement is down, and he appears, at least for the moment, to be working less hard. I dare say almost comfortably. His broncho spasms (which were part of the asthma like response) have stopped and today's xray did not seem changed. We have finally gotten his breathing to a more manageable place. So for the bad news..... They got around to the echo yesterday which showed that the pressures in the right side of his heart are higher. This is because of the back up in his lungs. This in turn is causing the unoxygenated blood from the right side to mix with the oxygenated blood on his left side through the residual VSD that he has. Which means that unoxygenated blood is being pumped through his body where oxygenated blood should be. Therefore causing low saturations and part of the need for increased oxygen requirements. Basicall

I don't have the energy to post all the details but today has been a trying day. Theodore has been up and down a million times over. One thing will look good but it causes something else to crash. Right now they are taking him off the "ISO" because his blood pressures have been way too low. They are keeping him relaxed and sedated with other drugs in place of it. So his blood pressure has come up but now his oxygen is down and he's working really hard to breathe. This has been the story all day. His xray  this morning looked worse than yesterday. But then he had a big dip in sats so they did another xray and it looked better than the one before- not what they were expecting. No cultures have come back with anything growing. There was a rumor of one being positive but no one has been able to find the proof. Long story short: they are perplexed. He is no better. He is not out of the woods. He is still swollen. He is keeping them guessing. And busy. I thought about no

Well.... where to start...... I'm a mess today. Totally fragile. I'm being such a girl. Rambo looks "better" today. And by saying that I mean only that he is not heaving quite as heavily. He is swollen all over and surrounded by pumps and bags and equipment. They have been messing with his vent all day trying to get his oxygen and carbon dioxide levels evened out. The problem is that he has two different things going on: pnemonia in his lungs and a severe asmthmatic like reaction in his airways. They way you treat the one is not the way you treat the other. In fact, they can be detrimental to each other. We get his oxygen levels looking good and his CO2 goes way up or we get his CO2 down and his oxygen goes down. They are setting low goals hoping to meet somewhere in the middle. The good news is that they got the amount of oxygen they are giving him down from 100% to 65%. His sats are sitting slightly low but that's the lesser of the two evils for now. He'

Theodore is not well. Today has been terrible. We were home for a record amount of time (on the short side) of less than 12 hours. We brought Rambo home last night around 6pm. His numbers were beautiful. He looked great and at 9:30 his sats and heart rate were exceptional. Unfortunately by 4am Ben came upstairs and told me that he had started with an ever so slight fever and high heart rate. We thought we would make it to the morning and then get him out of the house. Thankfully, God gave me the urging to get up and go check on him and his nurse. He was not doing well. By 4:40 we were completely packed up and on the way to my parents house. Our thought was that it had to be something environmental, something he is allergic to. So we got him out of the house and got his Claritin on board hoping that would take effect. It didn't. The escalation of his decline happened fast. So fast. And I don't know why. He was rolling through some serious oxygen so my dad went to get the r

It's actually not an "oldie". What I was going to say was quickie but a goodie but that just didn't seem appropriate....  We are headed home today. Finally after 14 days- our longest stay these past few admissions. I have stories to share and frustrations to air, but for now just the pleasant news. Home!  Theodore is back to baseline everything - no vent. I repeat, no vent, no pressures - just trach collar and oxygen like normal. I hope for good this time. Nothing has really differentiated the past discharges from this one except for the fact alone that we are further away from his original virus that got him extremely ill. And we've been told from the beginning that that is what it's going to take: time.  He's down for a nap and I need to pack!