Well, just as Shane and I lay in bed Sunday night contemplating how well Noah was doing and maybe, just maybe it wouldn't be months and maybe years of oxygen...Noah started desatting at about 2:00 AM. I got up, suctioned him, gave him an extra Albuterol treatment, changed his Pulsox probe and finally woke Shane up to change out his cannulas all together only to find it didn't stop him from desatting into the high 80's every few minutes. Finally we gave in and turned him up to 1 liter.
Of course I panicked and got in to the pediatrician first thing in the morning. His lungs were clear, everything looked fine, chest x-rays showed nothing had worsened....he just had a few extra sneezes and sniffles, just like his brother who has had a minor cold for almost two weeks (nothing big just some noticeable phlegm and more constant sneezing). I myself haven't felt the best so I figure it must be running around in the family. We even ran blood work only to find out later that afternoon that everything looked fine, nothing signaled infection.
So we are down to just a plain, old, silly cold. *Sigh* It is amazing how the slightest change can affect a child with CLD (Chronic Lung Disease). I even called the pulmonologist in Fresno only to have them agree that the simplest booger can throw these kids off and to keep them posted should his needs rise above the 1 liter.
So, we are here....still on 1 liter. He hasn't worsened and last night he did last for several hours back down to his 3/4 liter but Shane was on nights and was too exhausted to chase him once he started desatting and reposition, etc. so he turned him back up to 1 liter. He has been saturating in the desirable range today (92-100) so we've left him alone.
I just hope it gets better in the next couple of weeks. Everyone knows how long colds hang around.
On a good note, Jonah ate 20 OUNCES TODAY! YES, you heard it. He ate 20 ounces (almost 21). Talk about a complete anomaly. Even Noah had a fairly decent day, around 18 ounces. It would be too good to be true if this turned into a habit.
Well, I best sign off as tonight I get to be up every few hours feeding, changing and otherwise attending to our little men.
Until next time (let us hope it is a very boring, boring entry....we like boring and uneventful at this house.....unless it means good eating and weight gain)
Shane and Michelle