Saturday, March 28, 2015

Sloooooooooooow goings and signs

Last time I wrote I said something to the effect of weaning Theodore off oxygen and hopefully being off completely within a month or so.

HAHAHAHA. Pipe dreams. Here's the deal: he was doing really well, but then he got sick. A week of fever and low sats and high heart rate..... some kind of infection or virus, who knows. Anyway, we are going on 2 weeks now of no time off the oxygen at all. And that's okay. It shows us that he isn't ready to be free of it yet. Not fully anyway. Once he fully recovers we'll start weaning again, but he's showing that recovery takes some time. So we have just settled back into same ol' same ol' and aren't rushing anything. 

Below I am listing a link to a bunch of signs that Theodore has learned and is using or is learning. Several people have asked so here is your reference :)











Thank you

That's a good start for now. These are the ones that he knows and uses well. I'll do a list next time of the ones we are teaching him.

And for those of you that haven't seen this (and for those who have and still find it incredible like me):

HELLO. Is this not like staring directly at a 6 year old Theodore???! This is his great grandfather and the person he is named after, Theodore Payne Taylor. It's like the same person. It makes my heart so happy for some reason.  

I'll leave you all with that!!

Tuesday, March 17, 2015

Big news.

Big news on the blog today. (Drum roll please......)

We have started weaning Theodore's oxygen! You can probably recall that many many months ago we took him off his vent. (Remember that terrible summer of 2012 that landed him on the vent in the first place?) His oxygen requirement since then has also come down. Way down. 

We took him to the pulmonary doctor the other day, who apparently did not remember that he no longer uses the vent. She was quite pleased that he was doing so well. She also was the first person, aside from his primary doctor, who actually showed some concern about the bleeding from his trach issue. If you recall, last year he was flown to Hopkins because he had a lot of fresh blood and a clot come out of his trach. This has happened 3 times since then. Each time it's over within 30 minutes and he shows no signs of distress but we have no idea what is causing this. So the pulmonary doctor asked several questions and ordered an xray but I've heard nothing back so the old rule "no news is good news" applies. Although it still leaves it all a mystery. 

In any case, his oxygen weaning has begun. Because we already have him off the vent we have saved ourselves from at least 2 sleep studies (thank God... those are the worst things ever) and he is way ahead of the game. If all goes well, we are possibly looking at him being off the vent within a month. And he is doing quite well, but what I didn't expect is that it's not so much his oxygen sats we are watching but his heart rate. It makes total sense I just didn't think about it. He's had several days where he has been without oxygen for extended periods of time and has had no issues. However, yesterday even on his oxygen he had elevated heart rate and low sats. I'm not sure if this is just par for the course or if he has something else brewing, but we kept him on his oxygen all day and we'll see if today is better. Either way, the process has begun and that is seriously exciting and a little bit weird.

On a side note... I've actually lost him. Without his tubing I have no idea where he is and I've had to go looking for him in our home on several occasions. This could get dangerous. :)