Tuesday, August 11, 2009

3 Liter Update

So Gaines has been on 3 liters for a good 24 hours now. I think the general consensus is that he's not doing awesome with it (like I'd hoped) but he's doing ok. Yesterday he was at 4 liters 39% and today he's at 3 liters 52%. I don't think that's too bad. I'm not exactly sure what the doctor thinks since I didn't see him today but his nurse thinks he just needs a couple of days to get used to it. My prayer is that he won't go above 52%. I'm not so focused on him weaning down right now as I am just holding on where he is.

His nurse thinks that he's breathing harder today but I'm not so sure. This is her first day with Gaines so I think she just doesn't know his "normal"...Gaines just breathes hard. He might be breathing a touch harder than normal but I think its just going to take him a little while to get used to less pressure. Honestly I think it might take a little more than a week before they are ready to wean his flow again. Hopefully in a day or two he'll be able to start weaning down some but I'm afraid I'm going to have to keep praying for patience. Last week's doctor warned me not to expect last weeks progress to keep up so I'm trying to remember that even though he's not doing awesome at 3 liters, at least he's holding on and that is progress.

In Reed news, he had a little milestone today. When I picked him up from school he asked to get some water from the water fountain. Of course I didn't think he could do it but I entertained him and let him try. Well he drank out of it like he's been doing it all his life (and he might have been doing it for who knows how long). I mean, that's such an elementary school think to do and he's not even two. I'm telling you people...he's advanced.

I guess that's about it for tonight. I'm going to try and get to bed early.

Love to all,



maddie/cadesmimi said...

Sounds like big brother Reed is growing up fast...first the diving board, now the water fountain. They sure don't stay little long enough! Best wishes, Kathy

Katie said...

Praying Gaines has a good day at 3 liters! Is he still on the one type of canula that blows more similar to the CPAP?

Too cute about Reed. I love it when they do things that seem so much older than them. I agree hes advanced... no way I see Jonathan jumping off a diving board and he cant do a fountain by himself.

You guys are missing the good weather in DC... heat indexes in the 100s. :)

Katie & Jonathan

Heather and Travis said...

Praying that Gaines will continue to need less and less oxygen. Also praying for you and your family.

My daughter was born last August at 25 weeks (my water broke a week before) and we spent 107 days in the NICU. I know that her situation is not exactly like Gaines, but we spent so many days and nights worried about her oxygen levels. We tried numerous things and different medications. Shortly before discharge she was diagnosed with chronic lung disease. She came home on meds and on oxygen, but we made it work. She will be a year old in two weeks and is doing great. No more oxygen and her lungs are continuing to heal.

My heart just breaks for you because I remember those days and the feelings I had. I remember going in and immediately checking the amount of liters and the flow. My life became consumed by those numbers.