'The Diva' is slowly making a come back!

We were a little nervous the past few days because Lauryn was refusing to eat and was pretty weak and miserable.  She hasn't eaten since Wednesday night and had been off the IV since Sunday night.  However, things are looking up and she is starting to eat again.  She's not 100% but she is improving everyday!

She is very annoyed with Dr. Van Bosse because she hates the bar that is between her ankles to stabilize her hips.  As far as she is concern it is the root of all evil.  She was cracking us up in the hospital when she was giving the Dr and even a couple of nurses a piece of her mind about the bar. 
The nurses in the the NICU got a kick out of her because she was acting like such an adult and asking questions about what they were doing.  By the third day she was telling them which medication she needed. ('I need some benedryl because my casts are itching.'  'I need the medicine in my arm (IV) not the one I drink' or 'No sleepy medicine!' 'I need ice for my back!') .  Unfortunately, she had a nurse assigned to just her in the ICU and now she thinks that should be me!  ;-)

She has to remain sitting or laying down for the next 6 weeks.  That's got her good and mad too.  Can you imagine trying to explain to a 4 year old that she can't move around independently!?   Even when she had just her regular leg casts she was able to crawl around.  However, the dr wants her still since her thigh bones were basically broken and need to mend without any weight or movement.  We have a wheelchair that reclines to accomodate her but doubt we will be going anywhere in the near future.
Especially with all the flu and strep going around - no point in asking for trouble!

At the end of the day, she has
- had five procedures (on her both hips and both feet)
- with 10-12 incisions in her legs (we lost count)
- spent 4 days in ICU and 1 day in a regular room
- has long leg casts from thigh to toes with a bar between the legs to keep them still.
- she will be in these cast for 6 weeks
- she will be in short leg casts for 3 weeks after that while we wait for new AFO's for her feet

Many people asked why get so much done at once and the reason is to have it all over with.  If we tried doing this piece by piece, she would be laid up for months and months.  Plus I don't know if I'll ever get her back in a hospital again.  We are hopeful this is the ONLY major surgery and don't forsee the need for another one at this point.  Everything we are doing now is to make growing easier and give her as close to normal movement in her hip and foot joints.  We are also hopeful that in the future she can ditch the braces at least during the day!  That is our goal right now.  Lauryn's condition is not progressive and she was at her 'worst' the day she was born - so we can only get better!

Thank you EVERYONE for all your support and kind, encouraging words! It made the time in the hospital so much better. Thank you to our parents for all the help they gave us with the boys. I don't know if Lauryn and I would have made it without Raj with us in Philadelphia and that was possible because our parents stepped in and helped with the boys.

Day 4

She is having the epi taken out in an hour which will FINALLY move us out of PICU and moving to a regular room. She has has cold compresses on her back and hips to help with spasms and swelling.

We counted that she's has about 12 incisions from her hips down to her big toes (literally).

She's politely directing (ordering) everyone! Except with me she isn't so polite! She keeps ordering me to hold her and hug her but NO KISSES! Lol!

The drugs and the pampering service of the ICU Has heightened her diva-ness!

She is slowly coming around. Here is a diagram of what is involved with an osteotomy of the hips. The pins will be taken out in a year.

http://www.hipdysplasia.org/Resource/339/FileRepository/Infant%20Hip%20Dysplasia/Treatment%20Methods/Osteotomy/TES.JPG

Slowly turning the corner

She is a little more comfortable today although it was a rough last 36 hrs. I think the longest I've slept is an hour at a time in the past 48 hrs. Her goal today is to drink and eat something and to sit up. Since they also clipped tendons in her hips they are stiff but necessary to stretch. She can sit up but it becomes painful after a while and she gets spasms. We are hopeful that she will be getting the epidural and foley out tomorrow so we can come home Monday.

I can't say enough about how fantastic the staff here is. They are attentive, responsive and extremely compassionate. Far cry from when we were at children's hospital.

Raj has come to relieve me so I can go rest at the hotel. Will check in later. The following is her in her new wheelchair that reclines!

Great night, rough day...

Last night went smoothly for her. Today her pain management has been a challenge. A lot of 'break through' pain and muscle spasms. She has an epidural right now and needs occasional 'boosters' along with IV pain meds. They are trying to get her comfortable with oral meds - codine and Valium and now it is a matter of waiting for the cycle of new meds to become effective. They plan on keeping her in ICU through Sunday. So we may not leave til Monday at the earliest. I'm staying with her at night and Raj relieves me so I can rest at the hotel for a couple of hours in the afternoon. Of course the anesthesiologist told me the hip surgery is one of the most painful and she had four more procedures on top of that. Considering all she has to deal with she is being expressive and helping us understand where she is having discomfort. She also only cries when a spasm hits. She is pissed that she can't sit up, I can't hold her and she can't go home. But, who wouldn't be. They say the second day is the worst so hopefully she will so better this evening/tomorrow.