When the pressure is just too much...

If my update isn't as positive as usual, please forgive me, but I am feeling overwhelmed, scared and tired. I don't mean to upset anyone, but if you're at work, don't read this (Anne, I'm talking about you!). If you really want to, so it at home with a glass of wine or whatever your poison is to take the edge off.

Yesterday after 7 days of fever, terrible headaches and neck pain, diarrhea, nausea and doubled vision, they did a lumbar puncture (LP) on Ollie. Apparently the fluid basically surged out telling them there was major fluid pressure on his spine and head. A few preliminary tests showed cells in the fluid, giving them enough information to assume it is meningitis. They don't yet know if it's bacterial, viral or fungal. 

Meningitis is a rare infection of the membranes that cover the brain and spinal cord:(https://www.webmd.com/children/understanding-meningitis-basics)

So now they've started giving the antibiotics for the bacterial to Ollie, just in case. We're waiting for cultures to grow (or not) to confirm what type it really is. If it's viral there's nothing they can do but keep him comfortable and it should improve this weekend on day 10. If it's bacterial it should improve in the next 24 hours. If it's fungal (doesn't present that way, but is the most common in immuno compromised people like those undergoing chemo) we will have to give him another antibiotic. 

So as always the waiting is agonizing, like it was when we were undergoing tests for the lymphoma that they were certain was something else and kept saying was "atypical". 

Last night we had a few brutal hours (Mario thankfully was with me) when after a the LP Ollie's heart rate was low and his blood pressure was high. Nothing scarier than watching your child's heart rate tumble and having to scare him awake to make it go back up! Thankfully it regulated itself, but both Mario and I kept having to remind each other to breath, too. When he regulated, I went out to the car and just sat there screaming for a couple of minutes. When I was hoarse I went to a nearby grocery store to get stuff for him to take with a new med orally and a few groceries for myself. 

So they gave us two dedicated nurses last night to constantly watch his vitals on the monitor and physically. Two doctors also came in every 2-4 hours to administer neurological tests. He passed all, but they were concerned about one of his eyes that couldn't follow activity to the right. They felt it was likely short-term pressure on the ocular nerve. Let's hope.

Given the amazing nurses keeping watch, I was able to sleep a bit, but not well. We kept Ollie comfortable, giving him Gravol and morphine for the pain which was excruciating. He's also high anxiety now and kept panicking each time the pain came, so I did a lot of head and neck rubbing and breathing to try to reduce his stress. Going to the bathroom and getting him up was also stressful given it gave him a worse headache. Most importantly it's the concern about what this is doing to his brain after 8 days of trying to fight it. Who knew there would be something more stressful than your kid having cancer?!

Today they are doing an MRI to see what is happening in his brain and they decided to do another lumbar puncture  to rerouted the pressure on his brain, because after yesterday's he was lucid and chatty and hungry right after, so it clearly helped him. So I am waiting more. 

 Entrance to MRI

I bumped into friend Jamie who works at CHEO and she gave me the biggest hug and said she'd check on us later. While waiting I also went into the chapel/meditation room and prayed a lot and as I was by myself, had a big ugly cry and feel somewhat better. I couldn't take the pressure anymore either and needed to relieve my own. 

 The Chapel/Meditation/Quiet Room

He's out of the OR again and still in a lot of pain. We are giving him morphine for it for now, but that's worrisome, too because although it is a low dose, it can't be good to have kids on this stuff now than a few days. 

So more waiting and worrying. Still hoping and praying, too. Will update you as I can. 

In the meantime we're also worried about Abby who hasn't seen Ollie not I in 8 days now and although she has spent a lot of time with loving families who take great care of her while Mario comes to hospital, it's tough on her not to be home safe, not to know what's really going on here and just not to have her family together. It's also hard when she has big stuff going on that we can't attend like her heritage fair at school where we worked on.her project for weeks together. I've never missed things that were important to her at school in 8 years. A really big thanks to Mme. Clermont, Samar and Stephen for sending me pics and video chatting so she could show me everything virtually.

 Abby's Heritage project in French.

All in all, not feeling my usual glass half full self. I'll get back there, but really need a win soon to preserve our physical and mental health.

In case I don't say it enough to the many folks helping us, thanks so much for being part of our village. I wouldn't want to raise kids without any of you. Big hugs!