Daily Blog

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.

It has been an emotional and chaotic week.  Naya’s incisions are slowly healing and the antibiotics kicking in and fighting all the infections and bacteria in her body.  What has hurt the most has been her stomach.  She has 3 small incisions in her belly where surgeons did the laparoscopy and appendix removal.

We are now allowed to go for 10-15 mins walks a couple times a day.

Highlights of the week:

Therapy Dogs – Thank you for making our little girl happy for a few minutes each day.  You are all very good at your jobs!!

• Milo, Molly & George – Shih Tzus
• Reilly – Golden Doodle
• Charlie – Portuguese Water Dog

Charlie

Reilly

Milo the Therapy Dog

Naya also got to play in the music room this week.  Her favourite?  The drums.

And of course all of our awesome visitors – Thank you!  The support means so much to us.

• Monica & Peter
• Victoria & Shyla
• Lisa
• Grandma Margaret
• Kristina, Kora and Kaiya
• Dennis & Jessica
• Anna & Kate

Week 1 done… 3 more weeks to go… 

I’ve moved this information to here: Hospital Visits & Email Info (Click Here)

She’s allowed to get out of bed for a few minutes.  Went out for our first walk in 4 days. 👏🏻

After her dose of morphine we hep lock her PICC line (one less pole to bring with us) The EVD is clamped off and we take it with us.

It’s a quick 5mins stroll but it’s a great start. 😊

Sisters ❤️

CSF from the brain

Milo the Therapy Dog

PICC line

2 days post op and Naya is still in a lot of pain.  Not eating and barely drinking.  All normal after abdominal surgery so we’ve been told.

Infectious Diseases is making daily visits. A bacteria commonly living in the bowel has grown from the cultures taken from her stomach.  They have adjusted the antibiotics accordingly but expects her to be on it for at least 3 weeks.  3 weeks. So factor in few days needed to put a new shunt back in, Naya will be lucky if she doesn’t miss the first day of school.

Apart from the pain and the loss of appetite Naya is doing ok. She just not herself.  Even Milo the therapy dog couldn’t keep her smiling. She wants to get out of bed which she’s not allowed to do 🙁.  So besides the TV and the iPad, we’re trying to find things to keep her occupied.  Play doh, drawing, reading, painting rocks, playing with a toy dog who eats and poops (thanks Monica 😊).

To donate to Naya’s BC Children’s Hospital fundraiser page, please click HERE.

Since surgery 25 on June 17th we have had CSF leak out of her incision 4 times. We were expecting this. Well, maybe expecting is the wrong word but we’re not surprised.

Naya woke up with stomach pain. I didn’t think much of it except she was hunched over a little and didn’t want to stand up straight. By 11am she was in so much pain. She couldn’t walk or stand up… her tummy hurt around her belly button.  There was a swelling of CSF around her shunt valve. Things weren’t right. Off to the hospital we go.

MRI of the head and abdomen, ultrasound of the abdomen, she has spiked a fever and is lethargic, blood work, IV and a Shunt tap to test the CSF.

3 radiologists think she has appendicitis. They start her on IV antibiotics. CSF culture comes back. Bacteria.  We have a shunt infection –  meningitis.  A 3rd IV antibiotic is added.

Next day at 830am she goes in for surgery. Totally last minute. She bumps someone else who was scheduled.

Longest surgery we’ve ever had – 5 hours later she comes out of the OR.  All went well.

Surgery 1 – NeuroSurgery removes entire shunt system (including both catheters) and she gets 2 new catheters which come out of her head and they are attached to 2 EVDs (external ventricular drain). 1 EVD for each catheter.

Surgery 2 – General Surgery goes in and looks in her abdomen. Appendix looks fine but they remove it anyway. There is pus and inflammation everywhere – it’s a mess. They clean it all out.

And finally – Anesthesia puts in a PICC line. Basically a central IV instead of the one in her arm. A long term IV for medication.

So now life stops for 3-4 weeks.

She has to stay in bed while she gets around the clock nurse care. The EVD must be leveled every hour, plus every time she is repositioned or gets up to go to the bathroom etc.  3 different IV antibiotics, plus anti seizure meds, plus pain and nausea medication.

This is her 3rd infection. We know the drill. It sucks. But this time we have to manage not only Naya’s emotional and physical well being but also Teya’s. Teya doesn’t understand.

This is how the last weeks of summer break will be spent. What can I say… I am trying really really hard to keep the faith. Meanwhile being completely heartbroken. 💔

Last surgery June 17th and we’ve had brain fluid leaking for the last 2 weeks. Stitches and glue twice in the ER has kept it at bay for a few days at a time. But yesterday the dam broke. Back to Emergency at 4pm.

What sucks is Nayas been GREAT!  Outgoing and vibrant!!

But with brain fluid leaking out Neuro surgery is worried the chance of infection is high. Of course…. another thing to worry about. One thing at a time.

For now, another minor surgery to hopefully fix the leak.   🤞🏼

Meanwhile…. we had a great day today.

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We were supposed to go away this week for a beach vacation on the Island. A treat for our children… because after everything we’ve been thru this year, nobody deserves it more!

But we should have known better.

Wednesday morning, Naya’s wakes up with Cerebral Spinal Fluid (CSF – aka brain fluid) leaking out of her post op incision. Surgery had been more than 2weeks ago – how was this possible?

Nothing else mattered that morning. A phone call to Neurosurgery and a frantic paramedic dad trying to bandage up the leak to avoid contamination and infection. And off to the hospital we go.

Extra stitches and surgical glue as a last ditch effort to stop the leakage. If this fails surgery is the only other solution. Again.

So with the need to stay close to the hospital in the event of another shunt emergency, our beach vacation is cancelled.

Life isn’t fair. It’s times like these it’s so hard to stay positive and keep the faith. Because as a parent you just long to see your kids happy. But I can’t even do that for my children.

Damn you Hydrocephalus. My kids deserve better. We deserve better.

CT at 1am shows shunt is not blocked. But the hole Doctors made to communicate all the fluid spaces has grown over. So the right ventricle is building up with fluid while the other ventricles are draining.

Surgery at noon. A second catheter is put in just in that one ventricle. Not what I wanted to have happen but if it gives us more time in between surgeries then it’s worth the risk?

2 hours later she’s out. She gets her popsicle. And she’s crying saying everything hurts. What can a parent do?  You suck it up, put on the bravest face you can and tell her how great she did and that she will feel better soon.  Meanwhile, everytime she gets cut open for surgery…a little part of me dies.

It’s amazing how life can change in a matter of hours. Even seconds in some situations. She had 2 back to back birthday parties today.  She did great. She was having fun. Smiling. Being social. Playing games. Doing arts and crafts. Then a few hours later my angel vomits, has a seizure and leaves in an ambulance.

And now as I wait by the phone stressed out of my mind. I’m trying to convince Teya that her sister will be ok. She knows the drill. In the middle of the night if Naya gets sick, go wake up dad.

2 ambulances came plus a fire truck. People storming thru our house wearing uniforms and gear. How can a 3 yr old be expected to go back to sleep after that. And she won’t let me out of her sight.

I try so hard to have faith.  To stay positive.  To believe good things will come.  But on days like these, how I am supposed to keep doing that?

Look at this smile. The day couldn’t end on a happy note could it?  No.there was too much fun being had today and that wasnt allowed. Because apparently this little girl hasn’t been thru enough pain and torture.  Just when you think life is going good… it slaps you in the face and reminds you that you should have known better.

Fuck Hydrocephalus.

I have every right to be bitter.