More questions than answers

We saw our cardiologist yesterday.  She showed me her chest x-ray from the day we were discharged... her right lung was collapsed!  I'm still stunned that they chose to send her home with a collapsed lung. 

Soooo, she did a new chest x-ray and Adelina's lungs are clear so she said I didn't need oxygen anymore, that the collapsed lung was really the main issue.  We took the oxygen off and walked out into the hall to test her.  Adelina was NOT happy and belly flopped on the floor with a sob(she knew and remember exactly what happened last time, she cried the second we walked in the door).  She only desatted into the 60s which is expected so she told me to take her out and enjoy being oxygen free.  I should have known better.  She also mentioned that she didn't think the AVM's were as bad as originally thought and we couldn't really do anything about them right now.  We plan to go back soon to have a heart cath and hopefully coil some collaterals (we're hoping that little conduits have formed from vein to vein because they can be fixed).  If not, she may need her next Open heart surgery in as little as three months.  If they have to do it early they have to do it inside the heart.  Adelina's hear tis full of scar tissue and this would be very risky.  If we were able to wait until she was three they would do it outside the heart.  Also, if they do the open heart surgery this young they will have to do another one at age as she will have outgrown it.

The appointment was surprisingly short since we avoided being admitted so we took our kiddos to the Houston zoo.  Addy LOVED the freedom and was pretty impressed with the baby elephant.  If we picked her up she screamed bloody murder so we let her move.  I think she was just so excited not to be tethered. 

We drove home and discovered that Addy was breaking 5 teeth in (you know the molars that are part in part out... ouch!) so we gave her some tylenol and made it home without too many tears. 

In the morning just for peace of mind I checked her oxygen saturations after she'd been doing VERY little, just walking around the dining room.  Her O2 sats were at 58%!  I was and am still sick over it. 

We have gone now for weeks trying to keep her oxygen up and for the last two weeks trying to limit her exertion.  I put our Addy in the tub tonight and she was so blue compared to her big sister.  It's hard to know that we only know such a small amount when it comes to medicine and that so little research is done on congenital heart defects.  I pray for advancements and am grateful that we have a loving Heavenly Father that is omnipotent.