Wednesday, February 18, 2009- 45 days in the hospital

Thank you so much to everyone who has purchased tickets to the "IheartChristy" fundraiser.  We are going to have a wonderful time.  There are killer raffle prizes being donated from many people!! Thank you so much to everyone who as been working so so hard to put the fundraiser together.  The entire committee, especially Kanani and Tina!  Lorene has been driving around and picking up donations for the raffle.  Bev has been working relentlessly to get the amazing line up and selling tickets to everyone, driving to people's homes to deliver tickets.  What truly amazing friends Christy has.  I don't even know all the details of wonderful things everyone is doing to mention you specifically here, but Thank You!!  The entire family has just pulled together to do whatever they can to contribute.  Thank you all! Just a reminder that anyone who can not attend the fundraiser and would like to donate any amount of money can do so through pay pal.  It's fast and easy, and you can donate with a credit card! I'll review the steps again:

1. Log on to www.paypal.com

2. Click on "Send Money"

3. Fill out the form on the right side of the web page:

To:  iheartchristy@hotmail.com

From: Your email address

Amount:   XX.XX

For:  Service/Other

4. Confirm the amount of money being sent and click on "Send Money"

Mahalo for your support!

Every single day with Christy is just amazing!  She blows us away every single day!!  Christy was awake tonight, and full of enough energy to be part of the conversation, and was very alert.  Christy was nodding at every question and smiling and joking.  It was incredible.  Usually at night time she is so pooped out, she doesn't have enough energy to sit up and socialize too much.  Tonight, she was awake and just cruising with everybody.  Every time she responded right away and very purposefully I just get so giddy!! Even though she's been doing these things for a while now, it is just so incredible to see her now.  The control over her head improves constantly!  It's so so so so so exciting to see Christy so awake.  As Mom Gail said to me tonight, "We knew she was going to get to the place she is now, but it's so amazing!"  We just find that it's so awesome to see her make the progress she's making so fast!  Mom was admitting that she still cries when she sees all the brilliant things Christy is doing: Christy is sitting with her arms around Don and hugging him- crying, Christy is going #2 in the toilet- crying, standing without any help- crying!!  Christy has come so so far, and all because of the prayers and love comming from all of you.  Thank you so so much, everyone.

So, the big, huge news today is that Christy's trach is capped.  They did cap her trach her once before but only for four hours.  They left the cap on this time.  She's doing well, so they are leaving the cap in for 24 hours, and if she's breathing well, and still doing ok, they're going to close her trach!!!! yay!!!  With the trach plugged, Christy is breathing through her mouth and nose.  The trach is the exact same except there is  a 

little red cap (illustration) over the inner cannula, closing it off.  

The picture of this little baby 

is a little different than Chris' trach, but it gives you an idea of what is going on.  Christy's trach & this baby's trach both have red caps.  The main visual difference is that this baby's trach (the clear tube coming from her neck) is longer.  This makes the red cap stick out further. Also, the baby's cap is bigger and longer.  Christy's cap is more like the cap on the purple background.  It's flatter and fits into the trach, so just the largest area of the disk is showing.  Christy is having some coughing f

its, and getting used to the adjustment, but is doing well.  Her oxygen saturation is good.  Some of the air that she exhales is coming out around the trach site.  This makes a little blowing noise.  When Christy coughs, she is exhaling even harder, and more air escapes around the trach.  If Chrsity needs to get mucus out of her lungs, she just coughs like normal and the mucus should come up to her mouth.  Now that the trach is capped and she is breathing through her nose, mouth, and upper airway, she no longer has the humidifier attached to the trach collar!  She must be relieved.  The trach collar with the warmed, humidified air made her hot sometimes, I think.  It's just a warm, moist air blowing on your neck all the time.    

Also, with the trach capped off, the air can pass through her vocal cords.  Air passing through her vocal cords means she can make sounds.  So, Christy's other big thing today is that she SPOKE HER FIRST WORDS!  She said "Don" earlier today, and she clearly said "yes" twice tonight!!!  Talking seems to make her cough sometimes.  She starts to say the word and by the end she is coughing.  She hasn't spoken since January 5, 2009, so she has to get those vocal cords warmed up again!!!! I'm so excited for tomorrow!!

The nurse who took care of her tonight hadn't been her nurse for a while.  When he came in to do his assessment tonight, he had a "wow" look on his face-- he had asked Chrsity if she had any pain, and she nodded "No".  He was blown away!!  Christy is being more responsive to everyone, not just Donald.  But Don is still Christy's favorite, of course!  The nurse asked a second question, "Christy, are you having a hard time breathing?" and Christy responded immediately with a "No", shaking her head.  We get so excited every time!

Chrsity stood today again with Occupational therapy and sat in the Cardiac chair for exercise. Remember that Christy's left leg likes to stay bent & close to her body while she's lying in bed? The right one will do it too, but Christy will kick the right leg strait.  The left really likes to stay bent & in close, it does not kick up.  Christy & her therapist are working to keep her legs extended.  Christy will extend her leg for Donald when he asks, and tonight she was leaving it out strait and relaxed for a while.  Chris becomes more limber daily.  Christy had already convinced Donald to remove the leg braces (picture on left is a similar brace) on each leg to help her maintain both legs extended while in bed.  They must be hot and somewhat uncomfortable.  The job of these braces is to immobilize her knees so they stay strait & prevents the muscles from becoming contracted.  These knee immobilizers are also worn after surgery or injury, but Christy has a different goal. 

Therapist/Nurse Huddy is going the extra mile.  He is pushing her to do everything on her own, and it is working!  Donald forces Christy to use both hands.  

Christy is better with her left hand now, and the right isn't as dexterous.  Christy takes the cues from Donald, and strengthens the weak hand by trying to use it.  

Donald bought these cool exercise balls that you hold in your hand, similar to this one.  He got one for each hand.  Christy takes the ball/bag from Donald and Donald tells Christy "ok, now exercise" and Chrsity starts squeezing the ball and letting go, squeezing and letting go!!! It's unreal!  You see her grip get stronger and release.  She can do it with both hands but she needs to work more on her right hand.   Her motivation is going to get her better pronto!! We can't wait.  It's so inspiring to watch them together every day.  For better or worse, in sickness & in health, so help us GOD.  And God is helping us every day to battle through to health.   Tomorrow will bring us another amazing day with Christy... stay tuned!