Baby Emma Update - 10.25.09

Just received an update from baby Emma's Mom, Sophie...and it is to no surprise...she is tired : ( Please take a moment after you read this to think of one nice thing you can do to help the Crew family; Mail a letter of hope & support to the hospital, or maybe a picture that your children painted, give blood, email an uplifting article or miracle story, make a donation to the Emma Crew fund, get down on your knees & pray for baby Emma, send sister Ava a present, volunteer to help out at the Ronald McDonald house where Sophie & Tyler lived for the past month, PRAY PRAY PRAY, orgainze a fundraiser to benefit the Emma Crew Fund, mail a gift certificate for Tyler & Ava to use for dinners, send a poem to Sophie at the hospital, etc. : ) Let's all just keep surrounding this family with love, prayer & support as they keep marching forward towards brighter days.

All mail can be sent to:
Rady Children's Hospital San Diego
Attn: Sophie Crew (mother of patient Emma Crew)
3020 Children's WaySan Diego, CA 92123

Emails can be sent to: hopeandloveforthecrewfamily@gmail.com

Day 38: We've made it to rehab, but just like the last time we got here, we met a roadblock on this road that never ends...
The neurosurgeon finally removed her head wrap to reveal that she does indeed have another lump on the side of her head that most likely indicates an accumulation of CSF again. He wants another CT scan and wants to proceed with yet another surgery to add that shunt we have been trying to avoid this whole time. I am so done. I am so tired. This is not fair - Emma did not ask to be here - she didn't do anything wrong, she did not ask to have 4 surgeries, 10 CT scans, intubation 4 separate times, coma for 19 days, countless drugs, loss of so many things she used to have. This is not fair.
I don't want to do another CT scan... apparently just ONE CT scan packs 500x the amount of radiation as ONE X-ray. I know they are quick and only require her to get a dose of morphine and adavan to 'chill her out', she has already had 10 to date and I fear for what this will do to her long term - her brain is already damaged enough. Fear of future brain cancer scares me. I am leaning towards doing an MRI instead, which uses a magnet and no radiation. the downside here is having to be intubated and put under general anesthesia. The MRI process is almost one hour.
After either of these exams, the doc will then tell us how to proceed. He has been leaning towards getting a shunt for quite a while though. Although he is an amazing doc, I want a 2nd opinion. I don't want to cut into her head again - that poor flap has been opened up 4 times now - she needs a break.
In the meantime, we finally got a room in ortho/rehab Friday night. I am scared to decorate her room - will we end up back in PICU or IMU for this shunt surgery? Therapies won't start until Monday so I have been trying to work with Emma on my own. She gets frustrated with things she used to be able to do. I know she remembers. We can't work on crawling until she can use that right arm more sturdily. That right arm does not exist to her anymore... she uses her left hand and arm for everything. If you place your finger in her right hand though, she will grasp it - it is weak but much stronger than before. Her smiles are more abundant - I love to see that big cheeky grin. The 'stick your tongue out to me' game is definitely her favorite. She is eating more and more - we have started giving her soft 'people' food - scrambled eggs, soft sandwich pieces, banana... she loves it. We have to teach her how to eat properly though - the OT came to do an evaluation yesterday during lunch and explained to me that kiddos with brain injuries become much more impulsive, so in Emma's case, she sees food and crams it all into her mouth instead of chewing one piece and taking it one at a time. She is storing food in the roof of her mouth (weak tongue control) and grabbing for more.
We are still giving melatonin, as kids with TBI (traumatic brain injury) lose their ability to regulate their internal clocks. She slept fairly well last night - she woke up several times but went back to sleep within a few minutes - the best sleep yet!
My mom had to go back to France so Tyler has been at home with Ava for the past few nights. It gets lonely here without him. There is only so much of the hospital room, playroom and ortho playground I can take. I know Emma is tired of this place too... I really think that she will do better when we get her back home to see her room, her toys, her dog, her cat, her big sister...
Sorry, I am kind of a downer with this last update... I just want this nightmare to be over and to bring my baby home.
Love
Sophie and Tyler