(sitting next to Stella while PT/OT evaluates today) I'm trying really hard not to laugh out loud here...so is Erin. We each give the other a very "knowing" glance as the Physical/Occupational Therapist flips through a picture book with four options on each page and asks Stella "Which one is the hand, which one is the ear, which one is the carrot, etc...." Stella easy goes through several pages...then impatiantly starts flipping the pages herself because she is just that way...very independant...and "how dare they challenge me!" attitude. Not to mention, you just don't get out play food to cut open and then dare ask for them back...really...what are they thinking...
I missed spending time with Stella and Erin yesterday. Jay left for home around 3pm. My home, husband and kids were in desparate need of attention, so therefore; I took a "Stella Hiatus".
Erin reports Stella had a difficult night last night in terms of restlessness and pain control. Pour Erin managing alone looked a bit exhuasted this morning when I arrived around 9:20 (thanks to the rush 2-hour traffic in Metro Detroit)...I was told that Stella has started Physical and Occupational Therapy everyday.
The surgeons/med students/nurse practitioners, therapists, neurologists all agree she is doing very well. Her Scalp bandages were removed yesterday to check the sutures and staples. Dr. Sood, the surgeon, likened the devise used to shave her head to a "miniature lawn mower", Erin wasn't sure he was trying to make her laugh or not....but the reaction wasn't one of humor. The Jackson Pratt subdural drain was removed, her incision is healing as expected, no signs of infection and the one ventrical shunt remains in hopes her brian relearns to balance and recycle the cerebral spinal fluid that continues to build up in the cavity. The surgeons hope to remove this shunt tomorrow. Cross your fingers!
Word on the street is that she may not need in-patient physical therapy, but that decision has not been finalized. If this is needed, arrangements have already been made to Ambu-cab her to Grand Rapid's Mary Free Rehab Hospital closer to home. Otherwise, therapy will continue on an out-patient basis.
This morning Stella looked exhausted as well, I brought her a new stuffed puppy dog "Puppy" and Nemo to watch. She cracked a slight smile and seemed to perk up a bit...
After she fell asleep during the movie, Erin and I got lunch and had some quiet time. Currently, Stella is working with the PT sitting up bedside and enjoying placing her stuffed doll and new puppy on top of the PT's head. She lasted all of 10 minutes upright, which is amazing considering how she must feel right now....
It's a great sight seeing her playing, sitting and smiling. Life if Good!
M
Tuesday, January 19, 2010
Sunday, January 17, 2010
Post-Surgical day 2
Stella remains doing well. She started spiking a fever at around 6pm last night which, of course, concerned us, but the doctors and nurse reassured us that it's to be expected and today she remains at a low grade temp. She's been alert in-between doses of Dilauded. Coloring and directing us to get this and that (mainly drinks or food). She's been asking to watch videos, but falls back to sleep before we can start them.
Today the challenge continues to be staying on top of her pain. She asks for "ibeepropen" when she's uncomfortable. Her parents stay on top of her pain needs...
I brought Pei Wei (chinese take out) and had dinner with Jay and Erin. They seem in good spirits and have settled into the room...
Thank you for your prayers, support and cards...
M
Today the challenge continues to be staying on top of her pain. She asks for "ibeepropen" when she's uncomfortable. Her parents stay on top of her pain needs...
I brought Pei Wei (chinese take out) and had dinner with Jay and Erin. They seem in good spirits and have settled into the room...
Thank you for your prayers, support and cards...
M
Saturday, January 16, 2010
First Night in ICU
I received a phone message from Erin this morning with an update on Stella. She had a very restless night, more than likely due to anesthesia waring off and pain setting in. The doctors started giving her Morphine and it seemed to aleviate her aggitation. They are hoping to mover from the ICU to a Neuro. Unit later today or evening.
M
M
Friday, January 15, 2010
Home!!!
sitting at home...typing at the dinning room table...hard to believe the day is over...for me. For Stella's parents, the 24 hour bedside vigil will remain at the CHM PICU while Stella recovers more....
the minute Stella was finished in Post-op Recovery, the nurses came to get us as they wheeled her out of the PACU into the elevator on the way to the PICU. So for a brief 4 minutes her mom comforted her, checked her over and spoke in her ear. Her dad bent to kiss her and Brian and I both spoke words of love and encouragement, promising to see her upstairs. Still expecting a still heavily sedated little girl lying still on the gurney, we whispered and spoke mostly in generalities as if she would not hear us...because, how could she hear us or even respond in this state? But, to our astonishment, Stella did what Stella does best and exceed our expectations even in this fragile state...the PACU nurse asked Stella if she would like to "open your eyes and say hi to your mom"? Stella responded with a welcomed shake of her head "no". She was ok...revealing her ability to "out-stubborn" even the best of us. HA!
after she was settled into the ICU, we were able to attend her bedside...where she continued to awaken more to speak "wanting a drink" and waving "hi" and even signing "I Love You" to her Aunt and Uncle. What a relief.
Surgery details:
the details of the surgery were summed up to us by Dr. Sood that there were no "hiccups" in the surgery. It went very well. They removed a "little more of her Motor Cortex" than discussed, but not an unexpected in-surgery decision. The major concern was the use of her Right side of her body post-surgery. When her left ventricle begins to expand with cerebral spinal fluid due to the removal of the hemisphere, she may experience an decrease of right side use or paralysis until her brain regulates the ventricles, they will monitor this very closely and in 6-8 weeks will know if there will be any permanence to these changes in her right motor function. The fact she is speaking post-surgical so soon is a Miracle in itself to us, but medically, not surprising because the Dr's were almost certain the left side of her brain had already 'rerouted' this function to the R side of her brain as she developed...all in all...the surgery was the best case scenario and the next challenge is post-surgical recovery in the ICU. The current phase she is in.
What surreal experience....the emotional ups and downs...the waiting....the Jerry Springer on the TV (until someone came to their senses and changed the channel)...the perusal of Ashley's Senior pictures...the continuous web surfing (movie trailers, peopleofwalmart.com, shitdadsays.com, lastnightstext.com and of course updating the blog, email and fb'ing)...don't forget the three ladies who decided to hold evangelical church service in the waiting room with shouting to the Lord, down-on-my-knees praise and their belief that CNN and all news channels were holding a conspiracy on the Haiti earthquakes (huh?)....and the of course the very candid conversation I had with my two brothers on how we can save the world (well at least on a local level);)
It's been a long road for me with Stella, Erin and Jay....to see that she came out the other end does my heart good...because, honestly, I wouldn't be able to survive any other outcome....
Until tomorrow....
M
the minute Stella was finished in Post-op Recovery, the nurses came to get us as they wheeled her out of the PACU into the elevator on the way to the PICU. So for a brief 4 minutes her mom comforted her, checked her over and spoke in her ear. Her dad bent to kiss her and Brian and I both spoke words of love and encouragement, promising to see her upstairs. Still expecting a still heavily sedated little girl lying still on the gurney, we whispered and spoke mostly in generalities as if she would not hear us...because, how could she hear us or even respond in this state? But, to our astonishment, Stella did what Stella does best and exceed our expectations even in this fragile state...the PACU nurse asked Stella if she would like to "open your eyes and say hi to your mom"? Stella responded with a welcomed shake of her head "no". She was ok...revealing her ability to "out-stubborn" even the best of us. HA!
after she was settled into the ICU, we were able to attend her bedside...where she continued to awaken more to speak "wanting a drink" and waving "hi" and even signing "I Love You" to her Aunt and Uncle. What a relief.
Surgery details:
the details of the surgery were summed up to us by Dr. Sood that there were no "hiccups" in the surgery. It went very well. They removed a "little more of her Motor Cortex" than discussed, but not an unexpected in-surgery decision. The major concern was the use of her Right side of her body post-surgery. When her left ventricle begins to expand with cerebral spinal fluid due to the removal of the hemisphere, she may experience an decrease of right side use or paralysis until her brain regulates the ventricles, they will monitor this very closely and in 6-8 weeks will know if there will be any permanence to these changes in her right motor function. The fact she is speaking post-surgical so soon is a Miracle in itself to us, but medically, not surprising because the Dr's were almost certain the left side of her brain had already 'rerouted' this function to the R side of her brain as she developed...all in all...the surgery was the best case scenario and the next challenge is post-surgical recovery in the ICU. The current phase she is in.
What surreal experience....the emotional ups and downs...the waiting....the Jerry Springer on the TV (until someone came to their senses and changed the channel)...the perusal of Ashley's Senior pictures...the continuous web surfing (movie trailers, peopleofwalmart.com, shitdadsays.com, lastnightstext.com and of course updating the blog, email and fb'ing)...don't forget the three ladies who decided to hold evangelical church service in the waiting room with shouting to the Lord, down-on-my-knees praise and their belief that CNN and all news channels were holding a conspiracy on the Haiti earthquakes (huh?)....and the of course the very candid conversation I had with my two brothers on how we can save the world (well at least on a local level);)
It's been a long road for me with Stella, Erin and Jay....to see that she came out the other end does my heart good...because, honestly, I wouldn't be able to survive any other outcome....
Until tomorrow....
M
Recovery
At around 4:30pm the surgery was declared successful and Stella was moved into recovery thereafter. We are currently waiting patiently for recovery to be completed and they transfer her to the Picu unit so that we may visit her....Praise God!
Surgery begins....
We arrived at CHM in time to accompany Stella, Jay and Erin through the registration and pre-surgical regime. Stella immediately wanted me to read her a book and play. Her favorite past-time is playing with our phones and camera's taking pictures.
We met with Dr. Sood and the Anestethiologist and had a last minute 'pow-wow'. Stella then changed into her little yellow scrubs and with enthusiasm, new pink "hospital" slippers. (Pix to come) As the nurses came for Stella and Erin to take them into the operating room, we all felt a heavy cloud of anxiety and speechlessness. Calm and quiet as we gave big hugs and reassurance to Stella for lots of books and games when she was healed.
Erin ushered Stella out the prep room and I immediately began tears and requests for reassurance from Brian and Jay. Who, coming into a family hug, reassured me...so much for providing support to my family....geesh! Erin returned heavy hearted, but stronger than me. Brian coralled us all into a hand-holding circle of prayer. Trusting in God to guide the CHM staff and put his hands on Stella during this surgery.
The following hours were spent talking, laughing and solving the world's problems around the table in the surgical waiting room. Regular updates from the surgical staff reassurred us Stella was doing well.... An internal eeg was being performed after the surgery began to provide exact mapping of seizure activity and allowing the surgeon to determine exact locations to extract.
We just finished lunch. Still wiating for another update....
We met with Dr. Sood and the Anestethiologist and had a last minute 'pow-wow'. Stella then changed into her little yellow scrubs and with enthusiasm, new pink "hospital" slippers. (Pix to come) As the nurses came for Stella and Erin to take them into the operating room, we all felt a heavy cloud of anxiety and speechlessness. Calm and quiet as we gave big hugs and reassurance to Stella for lots of books and games when she was healed.
Erin ushered Stella out the prep room and I immediately began tears and requests for reassurance from Brian and Jay. Who, coming into a family hug, reassured me...so much for providing support to my family....geesh! Erin returned heavy hearted, but stronger than me. Brian coralled us all into a hand-holding circle of prayer. Trusting in God to guide the CHM staff and put his hands on Stella during this surgery.
The following hours were spent talking, laughing and solving the world's problems around the table in the surgical waiting room. Regular updates from the surgical staff reassurred us Stella was doing well.... An internal eeg was being performed after the surgery began to provide exact mapping of seizure activity and allowing the surgeon to determine exact locations to extract.
We just finished lunch. Still wiating for another update....
Thursday, January 14, 2010
....the arrival
Stella and her parents arrived safely into the Detroit area tonight...
Her Uncle Brian and myself will be joining them at 6:30 am tomorrow morning...
Join me here tomorrow for surgery updates...
Her Uncle Brian and myself will be joining them at 6:30 am tomorrow morning...
Join me here tomorrow for surgery updates...
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