Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, June 12, 2014

EVD day 4 - Climb A Mountain, Roll Down a Hill

Before I start, I want to remind you all of the tshirt fundraiser for our dear friend and Hydro mama Sarah.  Here is the link: https://www.booster.com/sarahstrong  .... they only have 17 more shirts to sell to reach their goal - I'm POSITIVE we can do this for her with the large audience that this blog reaches.  Spread the word to friends and family - let's continue to show Sarah love and support the way we can.


Yesterday (day 3) ended up ok but Meagan did vomit again twice.  She was not a happy camper throughout the evening and had a LOT of trouble sleeping last night.  Granted, we had no vomiting during the night, so I will take that.  Dr. R came in early and turned her up her pressure again.  Meagan was ok for a little bit but then became extremely irritable.  She was so out of sorts, we went ahead and had the nurse give her some pain meds.  Within several minutes, she fell asleep (hopefully pain free) and slept for hours.

Finally out

Once she woke up it was nearly after lunch time.  She still had a full soft spot and you could tell her head was bothering her, but she wasn't nearly as fussy or as bad as before.  The big girls are enjoying swim camp that Nanny and Pop Pop gave them to help them be distracted this week and also have fun, so today while the girls were at camp, Brian's mom (who is caring for them after camp this week) came to see Megs.  She brought a cute book and Minnie Mouse for her (Meagan's favorite).  Brian's mom read to Meagan for a while and then she was also able to call Grandpa on the phone and let Meagan hear his voice for a little bit.

Grandma and Megs

Grandma letting Meagan hear Grandpa's voice

The big girls enjoying swim camp from Nanny and Pop Pop

We had a few other visitors today as well. Our other dance friends are at camp but one of their moms came to see Megs.  She brought some very cute colored elephants to hang from Meagan's IV pole so she had other things to look at, and a few other comfy gifts.  Two other hydro families we know also visited.  Ann and her son Cass happened to be in town for appointments so they stopped up to say hello and brought some cute gifts and snacks.  Also, another hydro family we know Laura and Troy stopped in with their son Owen.  They brought Meagan some cute gifts as well including a book and homemade food for us.  Meagan is certainly very lucky with all her friends  - and a bit spoiled too. But, that's ok.

Meagan loves all the colors to look at!

Cass saying hi to Meagan

Owen chillin while he visits Megs

Meagan started to become irritable again this afternoon.  She was extremely restless and had glassy eyes while she winced and would hold her head.  This continued on for a while.  Every so many minutes, she would have moments of calm trying to sleep ... but then her body would jolt and she would cry again and scream.  After about two hours, she ended up vomiting again and then seemed to calm.  Once she was cleaned up, she did finally relax and doze off to sleep.

Not feeling well again by the afternoon

The day today was filled with climbing a mountain and finally reaching the top... but then moments of rolling back down a smaller hill.  I'm ok with that as long as she is overall comfortable and the mountains get smaller while the hills get further and fewer in between.  This is the tricky part of managing a "brain kid."  When Meagan is having problems, she can have a terrible day, or terrible parts of the day, or terrible night, but then have other parts of the day/night be ok.  She can be writhing in pain in the morning, and by afternoon be giggling and having fun.  This is the pattern we are seeing here with her - most likely due to the mornings being the most stressful times when her pressures are increased.  The brain is such an amazing and mysterious thing - it can be confusing treating brain problems because of this "see saw" pattern in which symptoms often present. The key is to focus on the issues, try to connect the dots, and come up with the best game plan to make that see saw a lot less rocky.

 The game plan for tomorrow morning is an early CT scan to check on Meagan's ventricle size.  We want them to have ballooned up larger.  If he is happy where they are, he will leave her at that setting over the weekend to stretch out her ventricles.  If they have grown but he still wants them to balloon more, he will turn her up again and then leave her at that new higher setting for the weekend to expand the vents. If they are still slit, it's a whole other ballgame so I'm not even going to address that right now.  We are hoping to see this has worked to expand her pressures a little and that we can move forward from there for a surgery plan to put back in a shunt system for her that will work better for her.  So we shall see what the morning brings...

So blessed to have so many sweet friends 

**** I realize in the first post I never really detailed what the EVD was.  I provided an informative link, but, here are pictures of Meagan's EVD.

A shunt can be externalized through the belly or brain - in Meagan's case, hers is externalized from her brain.  Her valve and catheter are still inside of her, but the orange part is coming from her ventricles and connected to a sterile tube that drains her CSF to the outside of her body.

The CSF drains into this tube which is measured in mL.  Once the tube becomes about 3/4 full, the nurses record the amount of fluid and then unclamp the tube which drains into a bag below.

Once the bag gets really full, it also then gets disconnected from the tube and disposed of properly.  The nurses add a new bag and start all over again.  Typically they told me they empty it every 8 hours but Meagan's is emptied about every 4 hours.


  1. I've been following your blog but not commenting lately. I just wanted to say good luck to you and Meagan. I hope they can find the right pressure for her. It sounds like a really stressful process. My Ellie had a rough spring last year and had an EVD for about a week due to infection. Its kind of an amazing contraption to see but also a pain (especially when you have a kid that sits up, lays down, sits up, lays down, so on and so on....I was changing the height of that thing all the time). I'll be praying for you.

    1. Thank you Kim. I've been shocked how well Meagan has been doing laying down - she hasn't tried to sit up until yesterday so perhaps she was feeling that badly! It is a pain though.. the clamping, unclamping..etc. :) We will keep everyone posted.