What a Mighty God We Serve

It is now more than 12 hours since we arrived at CHOP for Lilly's surgical check in.  Although it has been an incredibly. long day--we arrived here at 6am, waited in her pre op room for about 5 hours as they sorted out a bed shortage, then sat in the surgery waiting room with dozens of other families for about 6 1/2 hours, getting updates from a very nice nurse named Don every hour or so, and then waited to see her following recovery for about 30-45 minutes--the time has honestly gone very quickly.  The wonders of modern technology and the many facebook messages, e-mails, and text messages from friends and loved ones helped to bolster our faith and our mood, and our strong and mighty God graciously gave us peace through every phase of the day. 

For me, the hardest part of the day was when I suited up and went back with Lilly to the OR so I could be with her when they anesthetized her.  They opted not to give her versed (commonly referred to as "happy juice" because it relaxes the patient and acts as an amnesiac, making separation from mom and dad easier and easing anxieties) because of her lingering cough and because we knew, based on our experience in Birmingham, that having mama by her side was much more effective against anxiety than any drug.  She was indeed very anxious all morning as we waited (she fell asleep in my arms more as a defense mechanism than due to sleepiness or fatigue), and even more so as they administered the gas to put her under.  She fought the anesthesia as long as she could, and then fell into her sleep.  As I walked back to where Tom was waiting for me, my heart was pounding.

After our long wait, Dr. Campbell sat and reviewed with us how things went once has was finished.  He inserted 3 separate VEPTRs, one on each side of her ribcage extending from rib to pelvis, and one between two ribs on her left (formerly concave) side.  She now measure 3" taller, and her curvature was reduced from 130+ degrees to somewhere in the roughly 50-60 degree range.  Her chest wall is no longer collapsed on the left side, so even lying in bed she looks different.  She needed one unit of blood, but came off of the ventilator almost immediately post op.  Dr. Campbell was really happy with the outcome and we are so grateful for his research and know-how that led to this device and this procedure. 

So now we are here in her PICU room, where she is in and out of fitful sleep.  She has morphine.and tylenol. for pain control, and her first words upon awakening were "I want to get up" and "I want to go home."  Knowing this spunky girl, it won't be too long before we are doing both of those things.

I will spend the night by her side in the PICU, while Tom heads back to the RMcDH.  I am so thankful that one of us gets to stay with her around the clock.  I do not anticipate getting very much sleep, but for now that doesan't even matter.

Thanks to you, dear family and friends, for your prayers today and your continued prayers for her recovery.