Day 5....

Who says you can't look your best while in the hospital??

I got the curlers in her hair and then she was taken off the vent and back on CPAP, so there goes her curls.

Well, we ended up consulting with Kate's doctors this morning. They brought to us the harsh reality of Kate's condition, which in some respects is good, and in other respects is quite difficult to hear as parents. We found the most serious problem she is facing is a condition called Tracheomalacia (which is a very weak or soft Trachea). This is making it very hard for Kate to breath, which in turn may be increasing her heart size and function, as well as contributing to her Pulmonary Hypertension. According to the PH probe results, it shows Kate has significant reflux as well. There are a few options available to fix both problems, which would require a few different surgeries. This has been an extremely difficult decision for us to make, as we know how long it takes Kate to recover from surgery. We met with an ENT tonight who would like to do another Bronchoscopy to get a more detailed study. We're hoping that this will be conducted this weekend, so a decision can be made and we can schedule surgery.

Kate is doing really well and had a pretty good day. We decided to take her off the vent and back on CPAP. Since she was on it for 3 days, it caused a lot of irritation and swelling in her throat, so she has been pretty grumpy. However, she has done really well and is so glad to have that thing out of her throat.

It looks like Kate will be spending a few more weeks in the hospital, depending on when her surgeries are scheduled and how long it takes her to recover. Again, we appreciate all of your prayers and ask that you continue to pray for Kate.