Progress

Hi All,
I finally feel like I have an update for the blog. It's hard sometimes to figure out what exactly to say especially with a positive spin. To say the past week has been difficult is an understatement. My mum, my brother, my family and I have been through hell and back but there are so many hopeful signs that things are getting better.

Mum had the cranial cathedar put in last Wednesday night and has been recovering since then. Today she started eating again and also got up for the first time tonight with the help of her awesome nurse Sean. Tomorrow we will meet with Dr. Bernstein and some of the other neurosurgeons to discuss our next plan of attack. We hope to be able to remove the cathedar and that her ICP will stabilize on it's own and she can take some time to get stronger before beginning anything else. We are still waiting to hear their opinions and of course they give you options and suggestions on what to do, so we have our questions prepared to ask tomorrow to determine the risk/benefit ratio. I have noticed through this entire process is that there is always a risk/benefit ratio and we now feel better prepared to ask the important questions that we need to know.

I hope everyone had some time over the holidays to think about what is really important in life and took the time to enjoy it, whatever it might be to them. I can truly say that all of the presents that are still sitting under our tree right now really don't matter in the least unless all the people you love are there to share it with. I feel lucky because I will never look back with regret wishing my family would have spent more time together because we've always done just that.

Looking forward to another good day tomorrow and eventually bringing mum home. Thank you truly to everyone who has called, emailed, visited, lit candles, prayed and sent positive thoughts to Nancy. I like to believe that along with her own strengh and will to fight, she is overcoming this latest hurdle.

Lots of love to everyone.
Best wishes for a healthy and happy New Year in 2012.
XOXO Keryn and family!

What we know thus far...

It's hard to put into words the events of the last two days so I am just going to bullet point the important bits.

• Mum is still in the hospital
• She has been experiencing strange side effects since December 7 and we have been back to the hospital numerous times to try and figure out what was going on.
• The first visit (Dec 8) she was re-sutured at the base of the incision due to CSF leak and sent home
• The second visit (Dec 14) she was told her headache was caused by weening off the Dexamethasone and Codeine and sent home
• The third visit (Dec 18) they re-sutured the entire incision site and kept her for observations.
• Monday the Doctors still didn't really know why this was happening.  Maybe she might need a shunt put in to relieve CFS fluid that they thought might be building up in her head but that was another intrusive surgery to the brain so they held off.
• Tuesday her symptoms got a bit worse and the Dr's decided to do a lumbar puncture (spinal tap) to see what the fluid would tell us.  The first attempt was painful and unsuccessful, the second attempt was painful yet successful.  
• Wednesday AM we were informed that although her white blood cell count and CT scans have both shown to be normal they used the CSF fluid removed during the lumbar puncture and detected an infection in her head called Bacteria Meningitis.
• She was put on an antibiotic to fight the infection but her symptoms and pain continued to worsen.
• Neurosurgery was called and the Dr. came in to tell us that they would have to relieve the pressure in her head by putting a cathader in her head as they could not do the surgery for the shunt at this time due to the infection.  (To my understanding both of these procedures do the same thing except the shunt would be internal and allow the fluid to drain down the spinal cord and the cathader drains it externally from the head into a bag).
• She was sent for another CT scan and all of her blood work was taken and tested again.
• By 8:30 she was transferred back to Intensive Care and prepped for the cathader surgery.
• The surgery itself only took 30 minutes and although seemingly a success there are a few other factors that she is now dealing with:

1. Her blood platelette count is very well, due to the blood thinner medication she was on (Heparin) this could cause an issue called HITS which I don't know much about because it's the first I've ever heard of it.  She will meet with the Thrombosis Doctor on Thursday to figure out what to do about that.
2. There is still pressure in her head - need to figure out what that means
3. The infection needs to get under control as well - antibiotics should help this.

• She is now in ICU step down unit recovering with a single nurse Connie watching over her.
• She said she's not in a lot of pain but just antsy and wants to move around which she can't at the moment.

That's all I got.  Looks like Christmas will be coming to Toronto Western this year and truly all I want for the holidays is for my mum to get better and come home. 

Automatic Pilot

As Jane tells me, I am currently on Automatic Pilot mode.  I believe her and I think we all are in a way.  Sometimes my my mind wanders back to when I was a kid in grade school and mum used to send me to school with gourmet lunches...better than a stinky old Peanut Butter and Jelly on Wonder Bread and a fruit roll up.  We never got to have fruit roll ups or cans of coca cola...EVER.  Instead my mum made black forrest ham and havarti with sprouts on fresh baked croissants or kaiser buns, with Allen's Apple Juice boxes and if we were really lucky we got those chinese sweet buns with the hot dog already baked inside (they were Ryan's Favorites).  On occasion there would be notes in my lunches.  Sweet littles notes from mum that would say "good luck on your spelling test" or just merely "I love you".  I can remember sitting on the portable stairs in grade school opening up my lunch to find a letter from mum with such sweet sayings.  

On to the present...mum is currently back at Toronto Western Hospital.  We went back this morning and they admitted her due to some leakage from the incision site again.  She is pretty good spirits but we would really like to get this under control.  We met with the head of Neurology last Monday and it was a good meeting, unfortunately we've been back to emergency twice since then.  We will meet with him again tomorrow morning to figure out why this is happening and what we need to do next.

Radiation was originally scheduled to start Monday December 12 but was pushed back to now start December 27th and we will have to see if that plan has to be altered once again.

I will try to update the blog a bit more to keep everyone informed.

Keryn

Latvia and Beyond...

Dear friends, family and blog followers from Latvia (no seriously we have page views from Latvia). We had a little glitch in our recovery and decided to take a trip back to the hospital where Mum had her brain surgery. Recovery was going really well and she had the stitches removed on Wednesday just as they had told us to. When I called mum to see how her head was feeling she replied "wet". I didn't quite understand what she meant until I got home to see for myself. The incision site was in fact leaking a clear fluid quite consistently. Ryan took mum to emergency and waited patiently with her until the neurosurgeon came to take a peak. They decided to keep her overnight for observation and to run a few tests and scans. The Dr. Also came in tonight and put 2 new sutures in at the base of the incision site which will hopefully stop any further leakage. The fluid has been totally clear this entire time (looks like water) but is actually what they call CSF or Crainial Spinal Fluid. I think we all feel like we are learning way more about this stupid disease than we ever wanted to. We should get to go home on Friday once all scans come back clear. YAY! Our little lovely Granny is recovering as well, we took her into East General on Monday as she just wasn't feeling right. She seems to be doing much better now and we hope to also have her home soon too. Christmas is fast approaching and we want everyone home together to celebrate the holidays. Thank you always for everyone's support, words of encouragement and love. XOXO Keryn Ps...mums room is back on the 5th floor with 2 huge windows overlooking the city with great views of the CN Tower.