Hello Everyone,

Ruby will be admitted to Riley Hospital for Children in Indianapolis tomorrow afternoon and will have her first pial synangiosis surgery Monday 10/5, with Dr. Jodi Smith.  She will recuperate at the hospital for a few days, and then at home until 10/15 when she will have the 2nd surgery.

We glady welcome the prayers of anyone so inclined.  Please feel free to visit Ruby's Caring Bridge site and leave a message for her in her guestbook.

Jennifer
www.caringbridge.org/visit/rubymaejingli

Thinking of Ruby today.

Stay strong
Mark (Luca's Dad)

Hi Jennifer,
I'll be praying for Ruby today and for you.
Kim

Jennifer,  Hope the surgery went well and everyone is resting.  Times like these can really tire everyone out.  Keep us posted.

Hello friends,

Ruby was in surgery from approx. 10 this morning until around 4:30 this afternoon and I got to see her in the recovery room around 5 p.m.  She was awake, fairly alert and had already turned herself on her side by the time the surgeon came to talk to me.  She knew who I was, could squeeze my finger, let us know she was thirsty, that her head hurt and that she wanted to see her sissy. 

We are so thankful and relieved that Ruby made it to the day of surgery without experiencing a major stroke, and that Phase I is complete.  A few days of recovery at the hospital and we're hoping to be back home by Thursday.

Thanks to all for your good thoughts, wishes & prayers.

Jennifer

Jennifer,
I am so glad to hear that the first surgery went well.  Take care of that precious little girl and I will continue to keep Ruby and your entire family in my prayers.

Tracie

I'm so happy that Ruby is OK .... Jennifer you are very strong and brave mother ...

Ruby is home.  She is having quite a bit of pain, mostly at the incision site.  It looks good and is healing nicely so am hopeful that with with a bit more time & pain meds her pain will soon subside. 

She got really upset earlier tonight, cried very hard and started to hyperventilate although I was able to get her emotionally regulated fairly quickly so the episode didn't last very long.  After that she complained of a headache (vs. pain at the incision site).  Prior to surgery headaches were a very common scenario for her following a period of emotional disregulation.  Still, at only two days out from surgery, I am somewhat concerned.  I gave her a pain pill and valium (half-dose as she refused to take the full dose b/c it tasted awful) as instructed in her discharge orders, and had a nurse friend stop by to check her vitals and incision.  She checked out OK but woke up a couple of hours after taking the pain med still complaining of a headache and requesting an ice pack.  I called the pedi neurosurgery resident on duty and he OK'd the ice pack and an early dose of more pain meds.  She's awakened briefly for a bit to eat and drink and is now resting comfortably so I'm hoping this will be our roughest bump in the road. 

We head back to the hospital next Wed and she'll have her left-side surgery on Thursday, 10/15.

Hi Jennifer

I'm sure Ruby is fine. Keep in mind that she's only just come out of surgery after having people tinker around in her head, things aren't going to be normal for awhile. There's the incision, the hole in her skull and the bypass, all of which her body needs to get accustomed with. It will all settle with time, although she still needs to have the other side done.

You are doing everything right. Keep monitoring her and most importantly, try to keep her calm to aid the recovery process.

Stay strong
Mark (Luca's Dad)

Thanks Mark.  She is eating & drinking really well today, and had only a brief headache upon awaking this morning, which subsided quickly.  She played this morning and napped for a good part of the afternoon and she's resting now & watching TV.  You are right - her body has much to adjust to.  I was just worried last night b/c of how upset she became, but it appears that no harm was done.   :)

Jenn

Ruby's second surgery (left side) is scheduled for this morning at Riley Hospital for Children in Indy.  All the pre-op will begin around 6:30 a.m. and we expect surgery to begin around 10 a.m.  The hospital is FULL (no beds to be found - she is in an overflow room tonight, which is really more like a closet) of kids with the flu - praying that she stays flu-free during her time here.  We already had one flu-scare after the first surgery - hoping to forego that this time around.

Holding thumbs again for Little Ruby. She will be very much in my thoughts today.

Ask the nursing staff for a surgical mask for Ruby and remember to wash your hands regularly.

Be strong
Mark (Luca's Dad)

Ruby will be in my thoughts I hope everything goes smoothly

I'll be be thinking of you and praying for Ruby today. Take care of yourself.

All the best,

Paula