Hey all.
So we had our pulmonology appointment today. It didn't go completely horrible, but it wasn't great news either.
Chest xrays looked okay...the chronic lung disease is there of course, but the Dr said they definitely look better than the last one which was taken in the NICU close to discharge.
Next to the EKG. Serena's was fine. Edwin's was not. Champ has pulmonary hypertension and his right ventricle in his heart is enlarged because his little heart is working so hard because his lungs are working so hard. The only treatment for this is O2. So Champ has been increased to 450ccs (he came home at 500 so we are basically back where we started 4 months ago.) Champ will stay there for 2-3 months, and then MAYBE we can talk about weaning again.
It's tough, I feel so bad Champ has to work so hard to breathe. You can see it. But I'm just happy there is a solution. As I've said before, more O2 is not the end of the world.
In other okay news his bicarb is down which is good. He is still on the high side and no where near normal, but it has come down since March in spite of the semi aggressive weaning, so that is encouraging.
I'm not 100% sure of these weights, but I'm pretty sure Champ weighed 12 pounds 5 ounces and Serena was 12 2.
So now we have to see a pediatric cardiologist to do an echo of his heart in order to get the pulmonary pressures, and this will be followed over time. I have to call tomorrow to schedule that appointment.
So it wasn't the best day. I was feeling a little down, but not terrible. The though of his little lungs and heart working too hard really worries me.
In Beana girl news, Serena has been approved to be off O2 at all waking times. They want her to continue O2 while sleeping so she doesn't get overwhelmed and we make a clean break with the O2 when she is completely ready.
So we contiue to encourage weight gain and which creates new lung tissue. We continue to pray for no sicknesses that can be so devastating to those with CLD. We continue to have hope for the future and count our blessings every day.
3 comments:
Bummer about the appointments, but glad to hear that things are improving, even if its slower than we would like.
They're just so cute!!!!!
Your babies are so adorable. Look at those beautiful chubby cheeks!! It is hard to believe they were so little at birth. Your babies give me hope and I look much brighter into the future. Thanks for sharing your blog!!!
Michael's mommie
Glad to hear there is a new plan in place for little Edwin. Noah had pulmonary hypertension too, and with him it was just something that they watched until it went away - it never got too serious. He was on O2 for a good long time, though, so maybe that had an impact. Good luck!
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