Geesh....sorry it's been awile since the last blog. Stella was discharge, not without drama, directly to Mary Free Bed Rehab Hosp. She left CHM 10 days after surgery...

She is doing very well with her inpatient PT/OT/Speech therapy. Erin reports she's quite exhausted at the end of the day. Remarkably, she will be going home tomorrow 2/5/10. What an awesome day!!!

Thank you for your remarkable support. Every gift, card and inquirey is truly appreciated. Now our prayers are for a year of no seizure activity so that she may throw away her anti-epileptics and live a relatively normal life....

M

Java is a girl's best friend....

Erin and I had an interesting conversation at the beginning of the week about "Surreality"...my new word for the detached feeling you experience in your familiar surroundings under times of stress. Throw in a healthy dose of schedule confusion and this is how I started my day today.

I ran out of coffee two days ago. Making a mental note to buy coffee on probably "a gazillion" times (Alec's favorite number)...the actual act of purchasing a single pound of coffee for home seemed to fade onto the back-burner much like many things these days.

Last night...another mental note "I need to buy coffee"...but wait! I do not...tomorrow is Coffee with Principal day after drop off at school....woo hoo...just need to get to school in the morning...

Disappointingly, upon arrival, Erin (Friend) reminded me...Principle's coffee is every other Friday...not this morning....ugh! So, getting into my car, I decided to head straight to the hospital to visit Stella (it was Candy Land day)...but wait...my car mocks me with the Red "E"....need gas...I literally sat in my car a bit stunned at the way the rest of the world just passing me by has no idea how hard it has been for me to get coffee in the last 24 hours. In hindsight, a bit selfish of me...but warranted considering the events of the last 7 days.

Gassed up, coffee in hand I headed to CHM as planned. On the way I recalled Erin's and my conversation days earlier how deaths, stress, unemployment or a post-surgical child catapults you into Surreality! So many acquaintances, friends and family lovingly attempt to comfort you with words in reaction to your tragedies, challenges etc...but, it wasn't until this morning that I actually realized the perfect, most comforting words anyone could say to me in the midst of Surreality..."Can I get you some Coffee?"

Stella continues to improve each day not without challenges; low grade fevers. She's on her 5th IV site (she started with 3 post surgery). Her continued meds and IV fluids along with physical therapy irritate her little veins and prompt switching sites often. Today she about collapsed in exhaustion from a visit from "Logan" the Great Dane therapy dog, returning fever, painting toenails and sitting up during lunch for 30 minutes where she persisted to dip her french fries into her choco milk...this had to have been the best she's eaten post surgical! And, of course, several Detroit Tigers came to the floor to which we packed Stella in a wagon and caravaned her and her IV pole to the Activity Room for autographs and pix with Maglio, Inge, Guillen, Willis and the new and improved Miguel Cabrera!

I left in the afternoon, a latter status update from Erin this eve reports Stella had a CT Scan today to verify her brain is regulating CSF. They will more than likely be staying through the weekend.

Tomorrow, Saturday another Slumber Party is planned....

Slumber Party!

First, I wanted to express a big thank you to all of the followers of the blog, Fb page that have sent thoughts, cards, balloons, pictures, stuffed animal "friends" etc...to Stella. Her room has shaped up to feel festive and homey.

Yesterday, I ran into Nurse Alicia, whom I work with, in the CHM cafeteria... I seriously thought I was losing it when I heard a women's voice "Michelle", I looked up at the cafeteria worker who clearly thought I was a bit confused... She received a stuffed bear from my friends at Southfield Pediatrics whom she promptly named "Alec". Not sure if this is a shout-out to my son Alec or she named him in a post-dilauded stooper...either way it's cute!

Stella's night went a bit more restful last night, but the morning started with pain control issues again, vomiting and general abdominal discomfort. Of course, the entourage of morning staff entered the room early in the morning and it was decided to remove the last drain from her head in the afternoon. This drain is the one that is regulating the cerebral spinal fluid in the left ventrical post surgery. The hope is that Stella's brain has learned to balance this fluid itself now and it will be safe to remove. The concern would be that her left ventrical continues to overfil with CSF and there is deteriation of her neurological status...this may indicate she will be one of the 5% who will need a shunt placed which will remain the rest of her life. At this point, it would require another surgery.

I decided early today that tonight would be the night to spend the night with Stella and Erin at CHM. I busied myself ticking off my "to do" list I put on hold for the last week and packed my bags for the slumber party. Joe has been an awesome support for the boys at home and myself. In the midst of this week, we've delt with car repairs yesterday, built up dirty laundry, sport practices and other items that make up our daily lives....which reminds me, I forgot to put that last load of laundry in the dryer before I left home....

My trek down to CHM tonight was delayed by 20 mintes of traffic on 696 waiting in line to head south on 75...this would have been par for the course for the evening traffic in Metro Detroit, except when I reached my on ramp to 75, I realized I was waiting in the wrong lane the whole time. I was waiting in the ramp to go north, not south...that's why all those cars were wizzing by me at 100mph in the right lane...doh! Upon arriving at CHM, the bottom of my Chipoltle's Grill burritos bag broke open in the parking ramp and promply dumped Erin and my's food on the ramp floor. I'm thinking..."Really?" by this time...

Our evening was quiet, Stella and I played "War". (only got into a couple of discussions with her about cheating and stealing my cards). We talked and played with her new "Jungle Pocket" set...freshly supplied by one of the nurses during the day. Stella has brought sarcasm to a new level tonight stating "yah, yah, yah" when I speak...I thought to myself "maybe we should have had them take out the "smart-ass" cortex as well"....

...good night...I've got some slumber partying to do.....

Advancements....

(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

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

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

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