oxygen weaned!

Xander was able to be weaned on his oxygen!! He is now on 1/16 a liter. The lowest you can go is 1/32. This visit was a shock to me, as I had NO idea what to expect. We waited to see 5 specialists (the lung specialist dr., dietitian, respiratory therapist, nurse, social worker).

Because Xander is having issues with the bottle, they want me to try increasing the o's when he is eating to see if this helps. Maybe he is getting winded (so to speak) and doesn't want to eat anymore; he's having to work too hard. We'll see if it makes a difference. If he doesn't gain weight, then we'll mix his formula a bit differently, giving him 24 calories, vs 22.

Next visit is in 2 weeks... We'll see what they have to say then.

Meantime, we have to schedule an appointment for an ENT, an echocardio gram, and lab work. The ENT is to check the area in the throat to see why he is soo raspy. We are trying to avoid a procedure that has to "knock him out" (forgetting the name of it right now). But that procedure would probably mean one night in the hospital. It would allow us to know if the air way is too narrow for him to breathe well.

The echocardio gram will show us if his CLD (chronic lung disease) is effecting his heart.

Lab work to see how his electrolytes are doing due to the fact that he's on a diuretic. Also to see if he still needs to potassium chloride.

He did really well! And I'm soo glad that he was able to be weaned on his oxygen...soon enough, he'll be cannula free :)

oh as for the apnea monitor...they will change the settings that it will not go off as easily. Right now it is going off if the boys heart rate goes down to 80. I learned that a 6 month old baby (which they are approaching) can have a heart rate that low and it's okay (when they are sleeping).