Daily Blog

2 weeks later

I have loved having my family at home the last 2 weeks!

Naya has gone to school for a few half days and she’s been so excited to see her friends. Teya has been the happiest she’s ever been to finally have her best friend home with her. And just as Naya had wished for while in Hopsital – we went to the aquarium and we had sushi dinner. 😆

But it’s been bitter sweet… an elephant sitting in the corner of the room this whole time.

The headaches persist – night and day. They are now crippling and she’s in tears from the pain.

We had a consult with Neurosurgery today and her MRI last week has shown growth of the fluid space. That combined with her progressing symptoms – surgery will be booked for this week. Thank goodness. 😢

Discharged!

After 33 days (34 days according to Adrian) we are DISCHARGED!

The hardest 4.5 weeks of our lives. The fluid mass in Naya’s brain has not been addressed yet. She is not showing signs of impairment so Neurosurgeons are going to wait on surgery. It is not the decision we wanted, to come home knowing it’s not over yet. But we understand that right now, with everything she’s been through, it is the best decision for her.

Things aren’t perfect…Adrian and I both know it’s not a question of IF but WHEN will we be going back to the hospital.  For now, I have my family back together under one roof. Whether it be for a couple days or a couple weeks, I’ll take it!!

Naya will finally join her friends at school later this week. Thank you to her teachers and EA for visiting her in hospital – Rachel, Amy, Melissa and Risa. ❤️

Before we left the Hospital, her buddy George came to say hello and he posed for a good-bye picture. 🐶

Ticking Time Bomb

We asked to see Naya’s latest MRI image this weekend. And it’s an imagine we wished we could un-see.

We know Naya needs one more surgery to address the “cyst” as Neurosurgery calls it. But the word cyst doesn’t accurately describe the giant fluid mass in our daughter’s brain.

She has has been waking up at night with head pain. No nausea tho which is surprising considering the size of the “cyst.”  But this is yet another example of how amazingly accommodating the brain and body is. The fluid accumulation has been so gradual, the brain tissue has slowly compressed. If this fluid had come on all of a sudden, Naya would have been severely ill by now.

So now we wait… for surgery sometime next week. Tick tick tick….

4 Weeks later…we are sick of lemonade.

Week 4 is complete. We have been at the Hospital for 29 days today. And every single member of our family is traumatized. We are exhausted. Naya came into the hospital at the peak of summer and by the time she leaves it will be almost fall.

Naya wants to leave the hospital and come home. She wants to go to school with her friends. She is traumatized by all the surgeries, blood tests, tubes and wires. She wants to leave the hospital and get back to being a kid.

Adrian is sick of being at the hospital 24/7. He’s tired of holding his child down while she’s screaming in fear of getting hurt by the needles etc. He wants to come home and sleep in his own bed.

Teya is acting out. She misses her daddy and sister. She is always asking if Naya is better yet and when she can come home. She misses her bff. She thinks the only way to get attention is to be hurt or sick.

And Ive had enough of seeing my child sad and in pain. I am tired of commuting to the hospital everyday. Burning the money we aren’t making because no one is working on the ridiculously high price of gas. I miss my family being all together. I miss seeing my children smile.

It’s been a month of lemons. We can only make so much lemonade. 🍋😥

Thank you to all our families who visited this long weekend – from the Island and the Interior. To come all that way just to visit and give your love and support means the world to us.

    Sherrie
    Grandma Margaret
    Erika & Ava
    Gong Gong & Po Po

Post Surgery #28

All went well with Surgery last Thursday. The ventricle shunt was internalized but through a completely new area of the head and brain. The cyst was left alone until she shows symptoms.

We have a new brain surgery hair cut. I guess we’ll be stocking up on hair bands and bandanas.

Week 3

21+ days in hospital now…And we are glad Week 3 has come to an end.  We found out we had a new infection, extending our hospital stay by 2 weeks.  And we had a major complication requiring emergency surgery.

On a more positive note though – our highlights this week:

Daddy has been adamant about keeping Naya somewhat active.  We managed to find a stationary exercise bike that fits her and she rides it for about 10-15 minutes each day to keep her muscles strong.  As you can see from the picture below – the incentive is the ipad…. the more she pedals, the more she gets to watch.  =P

img_0210-1I have always said we meet some incredible families while we are in hospital.  Adrian and Naya woke up one morning to a beautiful hand drawn picture of a dog on our window.  A little girl and her mother were staying in the room directly above ours.  And after the daughter goes to bed at night, her mother goes around and draws pictures on the windows of all the rooms as a surprise for the patients in the morning.  How fabulous is that?! (Mom:  If you happen to be reading this –  Thank you!)

Thank you to our visitors this week:

  • Caroline, Michael & Joshua
  • Lina & Dena
  • Amy, Elaine & Amelia
  • Tirza, Liam & Cara
  • Rachel

Medical Update

It has been an incredibly difficult week and Naya is in surgery as I type this.

We had a complication yesterday night.  Because of the new bacteria found in her CSF on Monday, NS (Neurosurgery) decided to pull out one of her 2 shunts/EVDs.

Currently she has 2 shunts.  A shunt to drain her ventricle, and a shunt to drain a cyst in her brain.  The shunt in the cyst wasn’t draining fluid since the EVD was installed.  And it was leaking CSF (which is why she got this new infection in the first place).  So rather than risking further infection, the tubing needed to come out.  But when they did that, it caused the ventricle EVD to dislodge and the CSF stopped draining.  

She was up all night with nausea, vomiting and screaming in pain from the pressure in her head.  She couldn’t sleep.  She would moan in pain every couple minutes.  CT at 4am showed enlarged ventricles.  NS debated fixing the EVD in the middle of the night.  Instead she got some Morphine and a couple of hours of sleep.

Emergency surgery – she went in at 4pm.  Still waiting now.

(Side note: Bacteria sticks to rubber and plastic.  So even though she is on IV antibiotics, the meds cant get into the tubing.  So any plastic and tubing that is infected with bacteria could re-infect the brain if it is not remove)

*** if anyone is curious and has any questions, please leave a comment and I will explain.  Some people are incredibly interested in the fine medical details, while others are not.  I am never opposed to answering questions.  =)

Kick us while we’re down.

We started this week excited. We were given the go ahead by Infectious Diseases to internalize the shunt while we waited for the last few days of IV antibiotics to finish. Which meant eliminating a few days in hospital and possibly making it for the first week of school.

But no.

A new cluster of bacteria grew in her CSF cultures. We have another infection. 2 more weeks of IV antibiotic Vancomycin.

We are livid.

Not only have we canceled our beach vacation this summer. But we’ve missed parties and get togethers and summer community classes.  I wanted to take Naya to the PNE for the first time ever to see the Super Dogs.  And now I have to tell her she needs to stay in bed for 2 more weeks and miss the first 2 weeks of school.

By now nothing surprises us anymore. But seriously?  FML   😞

 

Week 2

Week 2 was all about healing and getting Naya healthy.

Half way thru the 2nd week, Naya’s appetite came back. And even though she still has stomach pain, we were able to wean her off the Morphine and Ondansetron (for nausea).  Doctors identified 3 bacteria causing her infection (2 in her stomach and 1 in her CSF) and we continue with IV antibiotics for another week or so.

Our short walks are going well – 3 to 4 times a day.  With Naya even breaking out into short sprints down the hall leaving dad to run along beside her with her EVD pole.  She is also back to being her silly self, telling jokes and socializing with everyone she meets.img_0973

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The Hospital Volunteers put on a Beach Theme afternoon.  There were Clowns, games and Arts and Crafts.

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Naya is loving all the emails too.  We put them up on the whiteboard in her room.

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And of course our visitors this week:

  • Grandma Margaret
  • Gong Gong
  • Dennis & Jessica & Alyssa
  • Monica & Zara
  • Sabrina & Kyler
  • Victoria & Shyla
  • Dena
  • Heather

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More than half way done now…YAY!!!

Thank you

I want to say Thank you to everyone who have reached out to us in the last couple of weeks.  Hospital visits, emails, text messages. They are all so greatly appreciated.

In the last 6.5 years people are used to hearing us say “She had another surgery.” “We just got home from the Hospital.” Etc etc etc. We sound like a broken record. But unfortunately that’s our norm. That’s our life. But it still hurts. It’s still devastating to see her in pain. To see the incisions. And to see her miss out on so many things.

Its hard to explain to people what we go through. Not many people understand. And sometimes just a simple “How are you doing?” Makes all the difference.

So Thank you! ❤️ The little things mean more than you know.