Saturday, March 10, 2012

Better late than never.

We're home. We've actually been home since Wednesday night but this is the very first time I've had a chance to sit down at the computer since then. 

After Rambo got pnemonia suddenly he had a series of ups and downs. He'd have a good night and then the next night would be awful. He was so dehydrated, he had diarrhea, he was fussy. And then the stuff in his lungs started moving around which is good but always causes the desating and plugs while he (and we) try to get them out.

Still chewing on cords.
He put himself to sleep like this.
Still doing his splits... and getting his IV'd foot stuck outside the crib.

Pretty much the only form of entertainment he had. He loved 2 videos. That was it. Do you know how many times I watched those 2 videos???
Not the best quality pictues... they are all from my cell phone...

Anyway, all of that mess extended our stay by one more night. BUT now he is happy and home and busy busy busy. I try to remember what a normal 15 month old would be doing - walking, chatting, etc. And although Rambo is only in the 8 month range developmentally I sometimes feel like he has the energy of a 15 month old. He almost made it into the kitchen today. I think I've had to replug his oxygen 15 times in 2 days because he scoots and rolls so far that it pulls it out. I don't even worry with his pulsox most of the time because he gets the cord wrapped around himself with each roll so that I would literally be fixing it every 30 seconds.

I think several posts ago I told you about how he had a bluish undertone, and thankfully with antibiotics that has gone away for the most part, but there are still times both of his arms will go purple. The doctors response: "Huh." And we went to the hospital looking like this:

Red arms and legs with a white belly and chest (it's a little hard to see in the photo. Cell phones.. grrrrrr.) Again, the doctors' response: "Huh." One of his docs at the hospital asked what his other docs were saying. And that's as far as it went. No one looked into it more. It was just left at that.

He did have an echo done at the hospital because he missed his outpatient visit. However, a cardiologist would not come see us. In fact, we asked several times and they said he needed to go to the outpatient center and see his regular cardiologist. Which is a bunch of crap if you ask me because every single cardiologist there knows him. I don't say that lightly. In his 4 month stay he met every single one of them. They did comment that the echo looked pretty much the same but would say no more. And I suppose its a good sign that they didn't have something drastic to tell us. But it was stressed to us to see his cardiologist as soon as possible. And after trying to make the appointment (which I couldn't get for another month) and telling them who he was the doctor called back and said she could see us this Friday. Maybe she is just good at fitting us in because of the awkward circumstances... or maybe there really was something to see. We haven't seen her in about 8 months and a lot could happen in that time. Plus, with the color weirdness and stuff it makes me wonder. In any case, there wasn't anything there that was imminent and that is good. 

I feel like I'm having a little more trouble adjusting to being home again. Getting into the swing of things is coming, but very very slowly. Theodore is being very helpful though by just being overall happy. That makes a HUGE difference. And my dearest wonderful mom stuck some easy frozen dinners in our freezer so I wouldn't have to think about food; my sister-in-law brought us a ham dinner. And THANK YOU THANK YOU THANK YOU to everyone else who keeps helping and supporting us. It's wonderful to know that we are not forgotten even though we are home for the most part. You know that just because we aren't in the hospital, our life is still very different and difficult- and it's going to be that way for a while. So thank you :)

Don't forget to keep checking out Rambo's Heart on a regular basis. Big changes are coming soon!!

1 comment:

  1. Glad you're home. Glad he's happy. I can't believe how far he had gotten today!!! Still so stinking cute, no change there. :-)