Tuesday, May 3, 2016

May 3, 2016 -- Bring It On, Seizures!!!

This post comes from another room and hallway of the Alberta Children's Hospital (ACH)!  So we counted up all the different rooms and hallways Hope has been in over the course of the last 4+ years . . . 

. . . Each of the four main units at ACH have four hallways, blue, green, yellow, and red, as well as rooms that surround the nursing station for closer observation.  On Unit 4, the unit where our family lived for 5 months, Hope had been primarily in the red hallway, with a few times in the green hallway, and a few times in rooms surrounding the nursing station.  However, when she returned for her back surgery, she added the blue hallway to her list on Unit 4!

Hope also has had a few visits to Unit 3 for her Baclofen pump removal surgery, then again for the infection that ensued, and now today she was admitted for Long Term Monitoring for the next few days to try to capture seizure activity on both EEG monitoring and video.  So she has now stayed in three of the four hallways here . . . the blue, the red, and now today, the yellow hallway!

When you also add in the ICU rooms, the ER rooms, and the day surgery rooms she has stayed in for overnight monitoring after general anesthesia, Hope has stayed in a grand total of 21 different rooms in this hospital so far, some of them multiple times!

She has been seen by 13 of the clinics here at ACH.  She also attended the Gordon Townsend Rehabilitation School for 10 months, daily . . . located here in the basement of the ACH.  She has visited many of the diagnostic testing areas, such as X-ray, MRI, Cat scan, Ultrasound, ECG, EEG, etc.  She has had 6 surgeries here and 2 MRI's under general anesthesia.  Can you tell that we love keeping tallies in our family!  : )

So, you could say that this hospital has become a bit of a "home away from home" over the last 4 years!  When we return, we see many familiar faces of doctors, nurses, unit clerks, technicians, therapists, porters, facilities maintenance, teachers, receptionists, and other various people that have intersected our sweet girlie's life and become a "second family" to us in many ways!  So many people here remember Hope, or they have heard about our girl and her unique story.  And along the way, we continue to add to that "second family!"  I can't say that our memories here are pleasant ones per say, but I can say that whenever we return, we are humbled and overwhelmed with the reminder of how much God has lavished His grace and mercy on us through this hospital and so many people . . . would be strangers, but now a "second family" and a place that we settle into rather quickly as a "home away from home!"  Watching Hope interact with the nurses and technicians is precious . . . how different from the many hospital stays before that she was either physically unable or simply too traumatized to be able or willing to engage with them, especially in a positive way.  Today she has been chatting away, diligently using her "grace words," telling stories, even reciting her poems to them . . . she certainly has a way of winning hearts!  What a reminder of how far God has brought her!!!  And then there was Hope's awesome Science teacher that knows the hardships of chronic health issues and familiarity with hospitals, who visited her tonight, bringing some of Hope and Gabi's favorite treats, and some light reading . . . Grade 8 Science textbook section on calculating efficiency and mechanical advantage of hydraulics and pulley systems . . . hilarious when he introduced it as a story book he brought to read to her . . . she was thrilled as she loves story books, and then when she identified the Science textbook about 2 seconds after he started reading . . . hilarious and priceless to have such a teacher that is both so humorous and compassionate!  She thoroughly enjoyed his fun visit, but told me afterwards that her favorite part was when he prayed for her before he left!!!   Thank you Lord for your amazing goodness to us!!!

So today as Hope is admitted for long term monitoring, we praise and thank the Lord for a hospital stay that does not involve surgery and recovery or an acute health issue, but rather a data gathering marathon!  We have been making daily entries and notes, as well as documenting details of all Hope's seizures and potential seizure events and possible triggers.  Now they will add in all the data they can gather from this hospital stay.  She is hooked to over 50 wires, belts, probes, and leads from head to toe tonight for a sleep study that also includes the regular EEG monitoring and 24/7 video monitoring.  Here are a couple of pictures . . . 

After about an hour of getting hooked up to the EEG wires in the clinic, this evening's adding of all the sleep study wires took over another hour!

Daddio affectionately called her the "Easter Bunny" after seeing this picture we sent him!
She did fantastic with all the hook up time this afternoon and evening, but the falling asleep part . . . that's not going so well.  It's after midnight and our girlie is still wide awake!  She is really bothered by all the wires, especially the ones in her nose, and finding it very tough to fall asleep.  But she's being a trooper . . . at the very least we are adding sleep deprivation to the list of triggers to hopefully get her to have seizures this week!  We are hoping to get some sleep data to add to the pile of data, so praying she can fall asleep somehow, sometime soon!

The plan is for her to be here until Friday morning, hopefully with some various seizure activity recorded.  They have already significantly dropped her anti-seizure medication dose this evening, and will continue to do that to help her along . . . yes, it sounds weird, but we all want her to have seizures!  At least for the next couple of days!  Hope is scared of when the seizures will come, as of course they aren't pleasant and she remembers them so much more so now.  If she doesn't have seizures by Friday, then they will most likely keep her over the weekend as well, to try to have a bit more time to capture some seizures.  Hope is really desiring to get home on Friday . . . she has a Junior High Spring Formal that evening that she would really like to attend if possible.  Also Trev would really like to lay our front yard sod finally on Saturday if possible, while we're getting some great weather for it!  Two and half years of a dirt front yard has grown old for sure, but more important, our voucher for sod is expiring in a month, so we need to get er' done!

We appreciate your prayers for Hope to continue to handle this week to the glory of God, even trusting Him through the scary and unpleasant circumstances this week will bring!  And for us to be able to support her and encourage her well through this!  We've already started reading a book together . . . she is asking me to read a couple more chapters to her now, to see if she can be distracted from the wires and nasal prongs long enough to be able to get to a place where she can fall asleep . . . so off I go to try to read somewhat coherently at 12:30 am . . . ha ha!  Thankful for my gracious and patient girlie!!!

You are loved and dear to us!  Thank you for your continued prayers for our sweet girlie and our family!


  1. praying for Hope and all of you. you are sick am example of faith and holding on to our father in heaven when faced with tough situations. A virtual hug to you!

  2. praying for Hope and all of you. you are sick am example of faith and holding on to our father in heaven when faced with tough situations. A virtual hug to you!