I am so glad that Jerry and I didn't let fear or nay-sayers keep us from coming to Houston to investigate the lung transplant option for Kiera. There are some who might have given up after transplant seemed the last option. We just took one step after the other to fight along side Kiera. Now it seems that getting out of our comfort zone so another group of eyes could start fresh with Kiera has resulted in finally facillitating a miracle for her!
Today, Kiera's ENT doctor said that the bronchoscopy of her trachea below her tube showed a "NORMAL" healthy trachea! I said, "NORMAL, normal?" and he repeated it for me. All the dilation and scarring of her trachea is gone after just two weeks with the Shiley trach tube. Her vent settings are great, rate of 26, pressure support 14, and O2 requirements 35%! She's eating well, and I looked at her belly this afternoon and it looked flat and normal instead of distended as it had been for quite some time. She's got abs of steel now and a belly button! She's 20lbs 7oz. She's even been antibiotic free since the 12th! Her doctors said they wouldn't have dreamed of telling me to hope for the kind of turn around Kiera has had. There was really no reason to think that the shorter Shiley trach would have been the answer for Kiera, but it seems to have done the trick.
They will be weaning one of her pulmonary hypertension meds, bosentin (the expensive one), and adjusting her feeds to 5 a day instead of the current 8. Her swallow study is scheduled for Friday. The most EXCITING part is that they think we will be able to transfer back to ABQ on December 18th!!!!!! Then we will work on being discharged from there. She'll still come home on a ventilator and need lots of care, especially with her trach till she weans from the vent. Then we will have to explore airway surgery for her before we remove the trach, although I understand that the surgery is not too complicated and is usually a one time thing.
Jer and I are still in awe. We don't even know how to take this information since it seems unbelievable!
What a Christmas Miracle!
Another Miracle: I got Kiera to wear a hat for about 20-30 minutes before she pulled it off! WOW!