Sunday, October 18, 2009
Baby Emma Update - 10.18.09
Instead of a precious picture of baby Emma, today I chose a picture of this outrageous roller coaster because I think it accurately portrays what the Crew family has been through over the last week. The climb upwards towards the graduation from the PICU into rehabilitation was joyful and filled with excitement as the Crews anticipated brighter days and the high of what all the new therapies in rehab would bring....to the emptiness they must have felt in their stomach when that high turned quickly to a low when they learned baby Emma would have to have surgery again...then the reality that surgery, nor recovery from surgery was easy. All of us can't imagine what this roller coaster of emotion feels like, so we can't tell Sophie & Tyler, we know how they feel. But we CAN continue to fall to our knees in prayer & uplift the Crew family, higher than we have ever uplifted them before. Please continue to spread prayer requests to your friends, family, neighbors, colleagues...anyone & everyone...specifically prayers for a "quick and painless recovery from this latest surgery, and for great progress in rehabilitation". HE is listening : )
Thanks to Sophie, for sending us this update last night:
Day 30. Wow, a lot has changed since I last updated. On Thursday morning, the docs rounded outside of our PICU room and decided we were ready for rehab! Wohoo! We were so excited to finally be moving out of the ICU and onto trying to salvage what we can of Emma's losses. The entire right side of her body has been affected (she has lost her speech, right side peripheral vision, movement of right side... these are only the things that we can see now... other things such as learning disabilities and speech/cognition won't show until years from now). It was a great day. Emma was finally coming off of those heavy drugs and was becoming more alert, calm and finally awakening from the sedation effects of her drugs. We wheeled her down to Ortho/Rehab and got settled into her new room. We were excited for the new schedule of therapies... PT, ST and OT. Well, rewind a minute to Thursday morning... Emma was feeling good, but we started to notice the CSF leaking from her stitches again... Em had what looked like two water balloons attached to her head - there was that much fluid built up at the craniotomy site! By Thursday night - our first night in rehab, the neurosurgeon decided to schedule surgery for the following day. The concern was that there was now a risk of infection...
Emma had her third surgery Friday morning. They reopened the entire craniotomy site to drain the fluid that was built up, and to drill in a temporary titanium mesh to cover the brain and section of the skull that was removed. This will be removed in a few months to be replaced by her real skull or prosthetic (as the doc explained 'kind of like Plaster of Paris that turns into a Coral-like material). Tyler and I found ourselves in that same waiting room - the last time we were in there was on that first night when Emmy had to have her first two surgeries to stop any more brain damage due to the swelling of her brain.
Well, recovery has not been that fun. Em has had a fever, has been uncomfortable (we have had to administer a few doses of morpheine), and has vomited a couple of times. Her left eye is completely swollen shut and is bruising. She has slept in 10 minute increments. She is so tired.
One of the other neurosurgeons came to see Emma today and explain that although he hopes this surgery works, there is still a possibility that she will need a shunt if the CSF can't reabsorb by itself. I am really hoping we don't have to go down that path...
We were hoping to start therapies today but that will have to be put on hold until *hopefully* Monday. We hear such great things about this wing of the hospital. The therapists are supposed to be awesome. The Doc is top notch as well. We are looking forward to getting her started.
On Thursday - our first day in rehab - we were finally allowed to take Emma outside to the Rehab playground. Emma breathed fresh air for the first time in one month... ahh it was so nice! She loved being outside! It almost felt like we had our girl back. Some of you may be familiar with Emma's fascination with planes, helicopters, birds, and well... anything that flies in the air. Before her trauma, she would point, scream in excitement and jump up and down at the sight of anything flying overhead. Tyler and I braced ourselves as we were out in the rehab playground - a few helicopters flew over us. We pointed them out to Em... I guess we need to be patient and hopeful that one day she will love them as much as she used to. Thursday was not that day, but that day will come. It just has to.
Tyler and I love that we can hold her again. Although we have to be careful with how we handle her head now, we can't get enough of holding our sweet girl in our arms. Her smell, her warmth and her little body cozied up to ours is addicting.
My mom brought some pajamas from the house yesterday. Em finally wore her first pair of cozy jammies in one month. Kind of nice to wear something other than just a diaper and a gown! We have to rework Emma's closet now - she can only wear things that button and zip in the front... at least for the next few months.
Thank you all for your continued prayers for our little girl. Please pray for a quick and painless recovery from this latest surgery, and for the great progress in rehabilitation. We just want to bring our baby home. Also, please keep the other children that are here in the hospital in your prayers as well. Tyler and I have unfortunately met a few parents during our stay who's babies and kiddos need all of the prayers they can get. Please pray for miracles to happen for all of these kiddos.
Sophie and Tyler