Lilystrong – Bravelets

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Posted on July 02 2014

June 30, 2014
Lily took a turn for the worse this morning. After her 4am blood gas, the decision was made to re-intubate her. X-ray showed that Lily's pneumonia has worsened, and everyone was shocked that she was able to avoid the tube up until this point. Due to an emergency on the other side of the floor, the PICU attending came over to assist. In typical Lily fashion, she fought the sedation and the paralytic. I could hear the doctors and nurses calling out all of the multiple doses of various sedation drugs, yet I could still hear Lily screaming while they bagged her. At one point She fought so hard that she popped the blue bag that was breathing for her. After a flurry of activity to get a new bag, everything finally calmed down. The team is meeting now to discuss the risk/benefits of sending Lily down for a heart catheterization today. Please pray for wisdom for the doctors, and peace for our little warrior
July 1, 2014
Lily has had an exceptionally quiet and amazing day so far!!! The initial cultures from her Broncoscopy have come back negative, but this could be a result of Lily being placed on antibiotics 24 hours before the procedure. The antibiotics seem to be working, as evidenced by her white blood cell count going from 51,000 down to 14,000. The biggest difference I have seen in Lily in the past 24 hours has been that her horrible edema is going away. The team feels that her heart was having to work so hard to breathe before intubation that all of her other systems had difficulty functioning properly. Lily has looked peaceful and comfortable all day, and has even woken up various times to smile at me and hold my hand. Oh what a precious gift this day has been to me. Please continue to pray that this day of rest will do wonders for our little warrior

July 2, 2014
Lily was taken down for her heart catheterization at 12pm EST. The surgeon will be taking 5-6 biopsies of her new hero heart that will be checked for organ rejection. We should have the results by tomorrow. The surgeon will also be determining whether he needs to do any interventions on Lily's left pulmonary artery and/or her Superior Vena Cava. He is hoping that the pressures in Lily's heart and lungs will allow her to wait the recommended 6 weeks post transplant before any intervention is done. If anything needs to be ballooned or stented today, it will be very risky because the sutures in Lily's new hero heart have not had a chance to fully heal yet. Lily has smiled a lot today, and has been mouthing sentences to me like crazy. This girl sure does have a lot to say. Just in case you are wondering...I am horrible at reading lips! I am so thankful that Lily is in a much better place today, and she was able to have this heart cath. I will update when I have more info
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