At CHOP and Staying Busy

Aubree got admitted yesterday and so much has happened since then. Yesterday, they took some additional X-rays of her spine and chest. They also tried her with no oxygen at two different times while sleeping, but she did not maintain her oxygen saturation and her work of breathing increased, so we put it back on pretty quickly (after 30 seconds the first time and after 1 minute the second time). Her co2 was also monitored throughout the night and stayed within her normal level. We also met with the pulmonologist that works with the thoracic insufficiency team here.

Today, the drew blood for some labs, all which looked great from what we understand. We also met with the orthopedic surgeon and inventor of the VEPTR, Dr. Campbell, and discussed the VEPTR surgery. He said that Aubree had enough soft tissue coverage on her back to cover the VEPTR devices. This is a huge praise because we have worked and continue to work VERY hard to make sure that Aubree is eating enough and gaining weight appropriately. This is very hard for children with Jeunes syndrome because they are burning extra calories with the increased respiratory work they are doing. We were actually told she was the first Jeunes baby they had seen that is on the growth chart for weight!

While we are thrilled that he has enough soft tissue coverage for surgery, Dr. Campbell would still like to see even more on her for her would be growing chest cavity and for her to be in the best shape possible for recovery. We talked with him, a nutritionist, and a resident surgeon about the possibility of her having a gtube put in for supplemental feedings at night. Please pray for us and the doctors to make the best decisions regarding this. While this is not nearly as major of a surgery as the VEPTR surgery, it still has daily implications and potential risks in and of itself. We just want to make the very best decisions for our little girl!

Dr. Campbell also ordered another ct to see what her lung volume looks like now, a spine ct, cervical spine X-rays, and a dynamic lung MRI. The X-rays will be either today or tomorrow and the MRI and ct scans will be Friday. Please pray for Aubree concerning the ct and MRI because she will have to be under anesthesia for these since she is a baby and can't hold still for that long. There is added risk for Aubree because of her restrictive lung disease with her being put under and ventilated.

We met with the pulmonologist again today and are going to try Aubree on Cpap (air going in with pressure) tonight to see if it is more beneficial for her than just the low flow o2 she is on. We shall see!

Everyone has been so nice! Everyone has been so patient with any questions we have had. The child life specialist has also been so sweet to bring brand new toys for Aubree to play with to help her from getting bored in the hospital.

Lady and Papa have also been great to bring us food, play with Aubree, and wash bottles. We are so thankful they are here with us. And, a room opened up yesterday at the Ronald McDonald house for the grandparents to stay at and they even have a place to safely park the rv! Not an easy feat in such a big city with little parking, especially for a vehicle that size!

We have been very busy with the many consults and labs we have had the last two days. This picture is the only one I have had a chance to snap. She was tired from so much traveling and a big day yesterday! Enjoy our sleeping beauty and please keep us, especially Aubree, in your prayers!