A day of appointments

Yesterday was a day full of rest for everyone.

Josie napping in her new outfit with her first baby doll.  Thank you, Jennifer!

Today, however, was a very busy day with clinic appointments.  Our first appointment was at 10am.  Back to the University we went.

Up to the fifth floor...

Through the double doors...

And into a world of kids just like Josie...

Kids showing off their helmets with smiles from ear to ear.  Letters of gratitude from parents covered this wall.  It was amazing and comforting to me all at the same time.  Many kids have been through these doors with significant outcomes.  We are at the right place.  My heart leapt with excitement as I read the thank you notes.  Feelings of I want to be that parent thanking this wonderful surgeon and medical staff.  Realizing, I will...soon.

The first visit was with Wai Chio, Dr. Jimenez' nurse.  I have been talking with her on the phone and email the entire time of setting up the surgery.  She is so very nice and compassionate.

She told us that the surgery time would originally be at 1030am tomorrow.  However, after we left the clinic and arrived back at the hotel, she called to tell us that Dr. Jimenez wanted to do her at 9am instead.  We were grateful!

She answered a lot of our questions:

• She is in the operating room with Dr. Jimenez and will be calling our cell phones to give us updates throughout the case.  
• The surgery will take 45 minutes to 1 hour of operating time.  This does not include anesthesia time or prep time.  
• They will not shave Josie's entire head, but will shave two strips where the incisions will be.  
• After the surgery is finished, she will take us to the PICU waiting room where we will wait until the nurse has settled Josie in.  The nurse will then come and get us to see Josie.  
• She said to expect about 8 hours of fussiness.  Periods of screaming out and then calming down in a cyclical pattern.  Josie will be receiving IV morphine for pain for the immediate postoperative period and then she will be on Tylenol and Ibuprofen every 3 hours which is what we will be going home with.  She said after 8 hours the kids calm down and begin to smile and act normal again.  
• There will be swelling for the first few days because of a substance that is injected during the surgery to prevent bleeding.  She said this will absorb after a few days but it can cause dependent edema, meaning where gravity takes it, it will swell.  We will sit her up as much as possible, is my guess, but they will tell us.  
• After the initial recovery period, we will start giving Josie Pedialyte and then gradually restart her formula.  
• As long as Josie is tolerating her pain medicine and feeds, we will be discharged from the PICU on Friday morning

We then met with the research nurse to give consent for Dr. Jimenez to keep her records and the piece of bone he will be removing for research purposes.  

Then we went down the hall to meet with Darren of the Cranial Center of Excellence.  He is the "helmet man" but his official title is the cranial remodeling orthosis man.  He was very nice and he will be who we will visit every time we come to San Antonio to get a new helmet fitted.  

First, he put a nice white stocking on her head so he could better see the shape of her head.  Isn't she cute?

Then he took pictures of her head and I took pictures of him taking pictures.

Then he used his calipers to take measurements of her head.  These measurements are what they use to determine how to make the helmet and also how much improvement her head shape is making as we progress through the orthosis (helmet) therapy.

This is his assistant Monica who helped also.

And this is the STAR laser scanner.  This scans Josie's head without using radiation to take measurements so Darren knows how to make the helmet when he combines the information with the measurements he made by hand.

In goes Josie and in 2 or 3 seconds it is done.  Literally that is how long it took.

This is what the helmet will look like.  Hard plastic with cushions all around it.

Our time with Darren and Monica ended and we ran to the cafeteria to get lunch before we met with everyone together.  Dr. Jimenez, Darren and Wai.

Dr. Jimenez was so professional and courteous.  We discussed Josie's crying spells, as she was having one at that moment.  He said that in the beginning, parents would come back to him and say "What did you do to my child?"  He said it kind of scared him but what the parents would say was that the child was happier and didn't cry as much.  He explained it is like her brain is in a vice grip because the skull is not expanding.  So she is having sudden headaches.  He said that we should notice a significant improvement in this aspect of our Josie by Monday.  I was thrilled.

After asking some basic history questions, Dr. Jimenez then started talking "doctor".  He recognized my knowledge base and basically walked me through my exact thought process leading me to him.  How my knowledge of the traditional approach, when it was about my child, was not the best option.  How, as it affected my child, the likelihood of blood transfusions, 7 hour operations and many nights of ICU was not good enough.  And what he said was that was the exact thought process that he and his wife had when they developed this procedure.  He said they had made huge advancements with the traditional approach, getting it down to 3.5 hours with 30% requiring transfusion.  He said after they had kids, it really began hitting home that a new approach had to be developed.  He was very honest about potential complications and the remote risk of bad things occurring.  They are not even worth mentioning here.  What is worth mentioning is that he has done over 500 babies with this, has never had to convert to open procedure and has had very good results on greater than 95% of his patients.  Even the "worst" outcome which is in one of his publications is still not bad.

Regarding Josie, he told us that she is a very severe case.  She is a bit older and larger at this point and his hopes of achieving a perfect result are not 100% but are still very high.  Had we gotten her here at 3 months, the percentage would be greater.  He just was very honest in stating that he may not be able to get perfect results with Josie, but the results will be very good and much better than she is now.  I stated that perfect is not important to me.  In my heart, I know this is not too big of a challenge for a Master Neurosurgeon...

Here is a picture of us with Dr. Jimenez:

After he left, we signed all consents for Josie's surgery.  I spoke to the nurse and told her that as a parent I am so grateful and excited for the work that they do.


As I laid Josie down to sleep tonight, I received a text from my good friend Laura who reminded me of a wonderful song which is so applicable now.

Because He lives, I can face tomorrow.

Because He lives, all fear is gone.

Because I know, I know, HE holds the future.

And life is worth the living, just because He lives.

For all of you who requested me to give this baby girl kisses, here it is for all of you!

Continue to pray.  We have to be at the hospital at 7am for the surgery at 9am.  Will keep blog updated, texts sent and Facebook status updated.