Monday, July 11th - Day 22

Guy and I have now decided that each time a doctor or nurse asks "Are you studying in medicine?" we will reply "Yes we are and we have been attending University now for more than 22 days!!" :-) We've also been in the PICU for that length of time of course and you actually learn quite a bit while being in there. It is somewhat entertaining at times to ask and present very tough questions to Tori's attendants and witness them sometimes heading to the internet themselves to look up the answer. No, No - We aren't just teasing them as all of the questions DO indeed directly relate to Tori. So we really don't mind asking them at all. I will try and include the technical references in my updates for all for you to do your own research if desired ;-)

At 3:00am or so Monday morning Tori began to display some symptoms of the Thalamic Storms I mentioned in yesterdays update. Her fever returned, she began sweating profusely and her arms and legs tensed up occasionally and shook for about 3 hours. She even threw up at one point during the morning. This episode completely wore her out for today so we opted to let her rest the entire day. The ventilator was left on her and she more or less slept all day. She had a nice, low heart rate and excellent blood oxygen levels and she was completely relaxed. She had a slightly raised temperature throughout the day and there wasn't much interaction with her other than the seldom and slight eye openings from Tori at times. Doses of Lorazepam also began today which are supposed to suppress the supposed Thalamic Storms.

The doctors also feel the Keppra will not be completely out of her system until tomorrow afternoon even though we quit giving her any doses early yesterday. They are continuing to give her Valproate which reduces the Myoclonic seizures like Keppra. This is the drug they will reduce next if Tori does not exhibit any Myoclonic seizures during the next couple of days.

Tori also received a new Trach today and she actually coughed up a mucus storm which sprayed the Trach doctor when he was installing it!! The doctor took it good though claiming "It's just an expected part of the job for me..." All in a day's work I guess. All in all today, Tori rarely coughed or had to be suctioned but she DOES have a verified pneumonia in her lower left lung. It was caught very early and she was placed on an Antibiotic immediately. Sorry, but I didn't catch the exact one she was given...

That is the update for today and tomorrow Tori will be removed from the ventilator again. We will see how she does and hopefully she will be more active as well. It was really great to see her completely aware and lively on Saturday and it would be nice to see her in that state again.

Thanks everyone,


The entire staff has really been great so far

As Tim is saying in his post today, the entire medical staff has been really good to Tori and her family.

Their genuine care for her comfort is quite obvious. Very rarely have we found ourselves concerned about her safety or comfort. Of course it is all relative.

The staff has been really nice explaining to us and her (important) what they are doing. For example, Tori doesn't like her 'IV dressing' changed. The position in which her arm has to be plus the cold products makes her grimace and move her arm.

They have taught us a lot already which makes being around Tori easier. If only the building maintenance people were as good as the medical staff. Between the power outages (3 times today) and the air conditioning breaking down it really seems to be jeopardizing patients safety.

As it was said in As a regular visitor to PCMC: "I know your daughter has the same special abilities".

Tori is amazing. She has made so many people better persons already. Her influence on our lives is un-deniable.


Great Pictures

I would just like to thank Guy and everyone for the wonderful pictures you have been posting. They are a joy to look at. Living so far away we don't have many pictures of Tori. It's great to see her with her friends and family. My daughter, Kristin was on the website last night and she really enjoyed all of the photos. The photos prove how Tori loves life! Keep fighting girl!

Also, to all Tori's friends, keep posting the photos, we look forward to them.

Janine Kopff