Thursday, April 28, 2011

Breaker breaker one nine mayday

Slowly, intentionally, moving only one muscle at a time I gently transition Rambo who is sleeping in my arms to his crib. Exhaling ever so slowly and quietly I remove my last point of contact from his body. It doesn't work. He is instantly aware of the change and sleep eludes both of us yet again.

Here we are... again. I had hoped to steer clear of this place after my last child, but I guess it's inevitable. The great conundrum: move it or lose it vs. slow and steady. How do you transition from holding your sleeping baby to lying them in their crib still sleeping? The answer: you don't. I've tried both methods and neither work so I'm not quite sure why I keep doing this to myself. But without fail every time I try one of these in hopes it will be THE time. This is the time the transition will go smoothly, baby will be none the wiser, and there will be much rejoicing. No such luck. Yet we all keep trying like fools. I weigh the options, consider his mood and go for it. And fail. 


And, of course, then I find myself where I am right now. It's 3 in the afternoon and he has been asleep almost all day. Have I been sleeping? No, why would I do that? That would be the wise choice. Instead, I choose the path of most resistance and catch up on laundry, make meals, write a blog.... When will I learn? I'm thinking never if I haven't learned it yet. 


Tonight when it's midnight and you are going to bed I'll just be preparing for my day to begin. I know I'm doing it to myself - I'm not asking for pity. Okay, yes I am. You'll be sleeping soundly and I'll be cursing the night. I'll say it again - such is life. Indeed!  

Saturday, April 23, 2011

Biff

Well, we've been home for almost a week. Today, I actually accomplished to get up, get dressed, and get a little bit of makeup on. I consider that a success. Of course, my hair has not been touched since yesterday and I'm totally overdue for a shower, but we're making baby steps. Somehow Theodore has managed to be the only one to get a bath everyday. I do envy him for that, but I'm definitely not willing to poop my sheets to get it. The things you can get away with as a baby. The means do not justify the ends for me in this situation. 





Our dining room has been turned into a mini Hopkins. I suppose he's worth the sacrifice of a dining room table. At least the carpeting is more appropriate for a bedroom. The couch has become my new bed and Rambo's nicely finished new room is not being used at all :(







So we have survived the first week. Maybe next week Theodore won't be the only one having timely showers or baths. Maybe I'll actually get clothes put away. Maybe if you drive a DeLorean 88 miles per hour you will actually end up in the past. All are just as likely to happen. The odds aren't really in our favor, but we will press on.  

Wednesday, April 20, 2011

Give me an H. Give me an O. Give me an M. Give me an E. What's that spell?!

Oh crap. What have we gotten ourselves into??

After 17 weeks and 5 days, 4000 hours, 4 months, 125 days, 1 1/2 seasons or 88 daily episodes of Jeopardy (depending on how you look at it) we are home. Johns Hopkins and Mt. Washington (thank God) are all behind us. Well, hopefully. I guess we're going to have to wait and see. 

Those were the best days of my life. YEAH RIGHT. 

We are home!!!! Woot!! Of course, now I'm getting less sleep and my house looks like the tazmanian devil ran through it, but it's all okay. Who really needs sleep anyway?? With little man getting medicines or food almost every hour of the day and night sleep is probably not something we are going to be too familiar with any time soon. We are on track to getting home nursing set up but that's probably still a few weeks away. So, that means, you need to get on it and get over here and help out. I don't want to have to count on State Farm to be a good neighbor. Have difficult baby. Will train. I don't discriminate. 

In all seriousness, I'm completely in over my head.

Just kidding :) We are doing great. Sleep deprived maybe but so happy to be all together again. So glad to be back in Cordova, to have our neighbors, to be HOME. Theodore seems to be adjusting well. Or he at least hasn't played any dirty tricks..... yet. The verdict is still out as to whether or not he approves. I can only hope he doesn't say "Negative, Ghost Rider, the pattern is full" and gets himself back to Hopkins somehow. 

I would say thank you to you all for your prayers, thoughts, and support, but I'm afraid you might stop if I do that. So I'm going to hold off. For now. :)      

Saturday, April 16, 2011

Night owl??







 This was what I had to put up with all night. It wasn't easy, but I made it. While you all were sleeping comfortably I was as well. 




He fell asleep around 10pm and pretty much slept until 9 this morning. He needed to be suctioned a few times, but went right back to sleep. I'm wondering if this is just a show he put on for me - getting my hopes up just so he can dash them into the ground. You never can tell what this kid is going to do. But my initiation into overnights with him was a good one.

Friday, April 15, 2011

They're dead, Claire! They're all dead!

Something tells me that Ethan and Claire aren't going to be the only ones seeing 0400, 4am this morning. Tonight I'm staying at the hospital to take care of Rambo to prove that we can, indeed, do this. (Man, I really hope I can do this.) I know I have 3 other kids but it's been a while since I've seen zero:dark thirty.

*Whispering so Rambo doesn't hear* The plan is, as long as he behaves, to take him home this coming week!! Please nobody tell him! He has a way of changing the plans that are made for him. So maybe if no one says anything he'll think he planned it all by himself. Because if those plans don't stick, you may have thought you've seen me upset, but I promise - you've never seen me very upset. 

In hopes of sticking with the plan, there should be a truckload of equipment arriving at our house at some point. Shift nurses will soon be put through the grueling task of being interviewed by me and Ben until we pick the one who can care for Rambo and also put up with us. Not sure if that's possible.

So raise your bottles of Nestle Good Start 28 cal formula or breastmilk, whichever you prefer - I don't want to know - and toast to a new start, a family reunited, and good ol' Cordova.

Monday, April 11, 2011

Nathan Algren

Apparently Rambo needs his methadone like Tom Cruise needed his sake in The Last Samurai. "SAKE!!!" Except it was 'methadone' he was screaming on Saturday when he was running a 40.1 degree Celsius fever. For those of you who don't speak Celsius, its hot. Like, 104 F hot. They just let him scream it out for a while.

Just kidding! Of course they didn't. This isn't Mt. Washington. Kidding, kidding....

Aaaaaaanyway, he was feeling much better after they upped his dose again. Give the man his drugs! And now, he's his happy go lucky self.

Of course he has this uncanny talent of being not happy go lucky when it's time for me to leave. I swear he senses it. I don't know how, but he does. That sweet little smile on his face morphs into something alien. And once the transformation starts there's no stopping it. I'm sure that all moms have experienced this, at least to some degree. It's time for sleep or work or something that will pull you away from your baby and they somehow know it's coming. So they save up their most pitiful, precious faces to guilt you into spending two more minutes with them. Two more minutes that turn into 20 then 45 and the next thing you know you're just getting around to eating dinner well past the kids bedtime.

Such is life, I suppose. And I have 4 kids so I must think it's all worth it. The moral of the story is don't marry and then divorce a man who's hired by the government or you'll end up in Australia being chased by Rico the drug lord.

Thursday, April 7, 2011

THE. Cutest. Thing. Ever.

Don't lie. I bet half of you are expecting pictures of cats or something else equally as soft and cuddly. Sorry to disappoint, but I'm going to inundate you with pictures of Rambo. I must say, he is pretty cuddly.









 And of course, I have to add my other 3 cutest things:




Now, seriously, who needs cats??

Thank you. That is all.

Tuesday, April 5, 2011

We're baaaaaaaaack.

It appears Rambo was not picking up the vibe I was giving him. I threw it out on the porch to see if the cat would lick it up - and it didn't. His violent hatred was not effective in the way I was hoping.

Warning: The following statements may not be acceptable to all viewers. It is the opinion of myself and does not necessarily represent the views of anyone else. If you have someone now or have ever had a child at Mt. Washington or if you know someone who works there please consult your doctor before reading.

On Friday we were moved to Mt. Washington. This was a good day because it meant Rambo was doing well. He was there to wean off his medicine and then go home. Unfortunately Rambo didn't see fit to have it work that way. And I must say, that I'm not terribly upset we are no longer there. Sunday night we were transferred and admitted back to JHH.

I have never been more relieved to see someone from Hopkins as I was on Sunday. I had more confidence in the three people from JHH and an ambulance than I did in the entire facility of Mt. Washington. In fact, the doctor from JHH remembered him. She looked at him and me and his paperwork and said, "Oh! This is Rambo!"

Our stay at the Mount was not exactly the kind I had hoped for. I am choosing not to go into details because I don't want to knock the entire place and I'm sure (maybe) there are people there who know what they are doing, but I didn't meet them. From nurses who kept putting me off to doctors who didn't listen to what I was saying, I encountered all type of unprofessional, unkind behavior. And lo and behold, could it be, I actually know what I'm talking about. Who would have thought???  It's almost like I know my son. Weird, I know.

I got a call from his nurse on Sunday saying that he was very agitated, running a fever, his appearance wasn't good so they were going to run some labs. This is after I told them on Saturday that something was up because he wasn't looking normal and the doctor told me quote "He looks fine now." Yeah, I wasn't happy. Anyway, long story short, he gets transfered back to Hopkins that night. We were admitted and are still here waiting to find out what's going on. No one is really sure. His blood pressure has been low today and he has been de-sating (low oxygen). They did find ecoli in his trach again so he is on antibiotics. He will intermittently turn a very dark red/purple mottled color from head to toe. Literally, it's all down his fingers and toes and on his cheeks, head, etc. They did a chest xray and everything looks fine. They also did an echo and it was the best one he has ever had. Yay! It's not his heart! The God-fix is still good :) They are running more labs to see if they can figure it out.

We are not back in the NICU or PICU. We are on the 6th floor (intermediate care). I think maybe he's trying to hit every floor in the hospital. I'm not okay with that goal.

So here we are again. Little man does not like to play by the rules. At least not anyone else's rules. I think he makes his own up as he goes.