Monday, September 26th - Day 99 Update

Good evening,

Tori's vital signs thankfully remained stable throughout Sunday night and during today. But you can see in her eyes and in her very low keyed behavior that she is definitely sick once again... It is also somewhat disheartening to see that ventilator attached to her trach even though it is providing very little breathing support for Tori. We have already switched it to spontaneous mode which makes Tori breath on her own but her heart and respiratory rates rise due to the Pneumonia she is battling. Helping her breath and letting her completely rest is the best support we can provide for Tori at this time.

Several bacterias have now been positively identified in Tori's Phlegm. Staphylococcus aureus and Bacilli are the two culprits this time... Two antibiotics continue to be administered with one of them being the strong Vancomycin we have used several times before.

Tori had an additional chest x-ray taken today and her lungs still do NOT look too infested with pneumonia like symptoms which is a very good sign. Her temperature does seem to fluctuate between 37-39 degrees Celsius as expected with a pneumonia. We all know how strong and how hard Tori seems to fight these infections and hopefully this will be just one more she beats!!

At 1:00am Sunday night it was determined that Tori's GJ-Tube had slipped out of her small intestine once again... Yes, that same GJ-Tube implanted a couple weeks ago which could never slip out again!!!... I am still unsure how the medical staff determined this, whether it was an x-ray or feed coming from her stomach down drain and I need to find that out. Maria nor I spent the night Sunday night because you are not allowed to sleep in the ICU rooms and there are no comfortable chairs in the rooms to do so anyway... Since we are only 5-10 minutes from the UVRMC we give the on duty nurse our phone numbers and hope and pray for no phone call late at night... Tori also has one on one nursing again which is comforting. So Tori had yet another GJ-Tube placed between 10:00am and noon today. Maria warned the radiologist Tori was tricky due to her SMA syndrome as he confidently walked her into the room. We are not allowed in the radiology room at the UVRMC but when Tori came out two hours later there was a little less confidence displayed... Feeds were started once again after she arrived back at the ICU.

Tori also had her first blood transfusion today... The White Blood Cell count in her immune system was very low and we needed to bring it back up quickly to help Tori fight off the bacteria in her system and to prevent against any Septic Shock conditions. She was given two pints of blood and will have her white blood cell levels measured again throughout the next week or so. Her sedation was also turned off this afternoon so she was more awake and aware of her surroundings. She has a room with a great hallway view and she tracks everyone in it and everyone walking by.

One troubling new behavior we have witnessed in Tori over the last three days is some apparent seizure activity. She had a couple of short seizures a couple of days ago and now at times her eyes will just shift from side to side rapidly for two seconds. It seems to occur when she is focusing and it doesn't happen very often. We are now examining some of the new medications she is receiving since nothing else has charged in her care to cause this. Two of the three new medications are known to cause seizure like activity so I had them remove one of them tonight. So we shall see what tomorrow brings us.

I believe it will be good to close with some positive items tonight. For one, many of the ICU medical staff members now working on Tori know of her already which is wonderful!! Thanks to so many of YOU who support and spread the word about Tori!! Those who know of Tori also seem to give her that extra bit of care she so greatly deserves. The ICU nurses are also appreciative of everything we are doing for Tori though one was quite shocked when she saw Maria suctioning Tori. Maria quickly explained she has been doing it for 98 days and everything was well :-) I had a similar positive experience tonight when I asked the nurse not to administer one of the seizure causing medications we have under question. She accepted and agreed with my assertions on NOT to give the medications and she would confirm it with the doctor. These behaviors greatly increase our confidence and theirs in providing Tori with the best care possible.

Thank you once again everyone,

-Tim, Maria, Tori, Whitney and Brendan