In PICU

Stephanie is recovering quietly in PICU from her corpus callosotomy surgery. What a great feeling to finally be at her side. Technically I am writing this from my room in the Ronald McDonald Family Area.

I will not be allowed to have my cell phone on in PICU but I will go into the waiting room once in awhile to make calls and check messages.

It's difficult to see Steph with drains, machines, and wounds but I am thrilled that she asked for water right away! Thank goodness her speech is still intact!

Here's a quick look at what we first saw when we came in the room. She will have swelling as the days go on but right now she looks great.

Sent from my iPhone

Here we go...

With about an hour's worth of sleep we are off to the hospital...if I can ever possibly wake up Steph out of bed!

I will keep in touch throughout the day.

Sent from my iPhone

Surgery on Monday

We just can't believe it.  Stephanie's lumbar puncture on Wednesday had an opening pressure of 17.2!  Not only was that just about the lowest we had seen since she first got sick 2 years ago, it also meant that she was now eligible for the Corpus Callosotomy brain surgery.  My husband and I both cried in the procedure room out of pure relief and a sense of hope.

It quickly set in though that we were now faced with dealing with the reality of what happens next.  I am sure we both thought, "Be careful what you wish for, it just may come true".  It's a very strange feeling to somehow be elated at the prospect of Stephanie being able to have this brain surgery when only 5 months ago the thought of her undergoing such a procedure was almost excruciating.

Well, she's scheduled for surgery Monday, July 23, 2012.  Not much time for a parent to process all the questions, concerns, and emotions that are keeping me awake at this very moment.  I will be able to post updates to this blog via my iPhone and let everyone know how she does during surgery and the recovery process.  Stephanie will be going into PICU (Pediatric Intensive Care Unit) immediately after surgery and may stay there for a day or two before being moved to a regular ward for the rest of the week.

Big, big hugs to our friends and family for their love, support and prayers as we take this very huge step to hopefully provide some palliative care for our baby girl!

Make-A-Wish Visit!

We had a great visit from the Make-A-Wish volunteers Christa and Cody this evening. The process of granting a wish can sometimes take up to a year, so it was especially nice to get a quick visit from our new found friends who came bearing a gift!  Stephanie is now the proud owner of a new Jewel t-shirt!  Thanks Christa and Cody for taking the time out of your busy lives to put a little smile on Stephanie's face.  We anxiously await news of being able to meet Jewel in person...to be continued!

Surgery Plan

So we have a plan (or plans) in place.  Either way Stephanie will be having surgery at the end of July. 

Once again we are going to try to get Stephanie's intracranial pressure down by significantly increasing her Diamox medication and putting her on a second round of steroids until July 18th.  On that day, the neurologist will do another lumbar puncture to check her opening pressure.  If the pressure is reasonable (the surgeon wants it to be under 20 cm H2O), Stephanie will undergo the Corpus Callosotomy that we are hoping for.  If her pressure is still too high, she will be receiving a VP Shunt, which should hopefully decrease her pressure over time so that she may be eligible for the corpus callosotomy in the future.

Only time will tell how this plays out but for now at least we can expect some type of surgery by the end of July.  One step closer to getting some much needed relief for Stephanie, both from her seizures and her increased pressure.

Wish her luck!!!