Friday, August 12th, Day 54 Final Update

Wow!! What a wild and humbling ride it has been over the last two days. I'll give an update now of exactly where Tori stands presently and I will also include the sequence of events starting Thursday morning after it.

At this moment Tori's Vital Signs are all within range of normal which is quite the contrast from last night. She is still running a fever of 38-39 degrees Celsius which is expected as she fights the Cocci related bacteria that infiltrated her system from her PICC Line which has since been removed. She will continue to take the antibiotics to fight this bacteria for 10 more days and she is expected to improve with each passing day. She is not very alert at the moment because she is still very ill and she is sleeping alot to compensate and heal. Maria and Aunt Laurie are also spending the night with her tonight.

Below is a lengthy and detailed summary of the past two, very trying days:

Tori slept very, very well late Wednesday night and early Thursday morning. The nightly Zanaflex combined with the Bennedryl and Melatonin 'cocktail' is definitely a winning combination for sleeping. She was also suctioned only twice that night so I slept just as well as she did.

At 8:15am Thursday morning Tori vomited and she aspirated it as well. At that point her feeds were immediately stopped and her G-Tube was vented to remove all of the Bile from her stomach. The vomit was bilious and but we could detect feed in it as well. Remember that Tori's feeds are bypassing her stomach and going straight into her small intestine through the NJ tube so there should NOT be any feeds in her stomach. This raised our concerns so X-Rays on Tori's stomach and lungs were ordered and the results showed positive for lung aspiration and that her NJ-Tube had slipped from her small intestine and was inside her stomach again... It was still in place on Sunday so it slipped sometime during the week.

Tori continued to vomit small amounts many times after that even though there wasn't much at all in her stomach. It became very difficult for her to breath and the respiratory technicians had to bag her to keep her blood oxygen levels up and her respiratory rate down. Her temperature had also risen very rapidly to 39 degrees Celsius. We couldn't quite figure out why until we received the blood culture report from Wednesdays draw which was positive for a Cocci type bacteria. Antibiotics were immediately given but you could tell that the bacteria was already attacking.

Tori could very clearly NOT breath on her own and maintain acceptable blood oxygen levels. When we tried to let her breathe on her own the level would immediate drop to 70% or below and her respiratory rate would increase from 25 to 70 breaths per minute. We had to get her to a ventilator so we quickly packed her up and rolled her back into the PICU at approximately 3:00pm. The PICU team stabilized her and put her on the ventilator and Tori remained in her current condition until 8:00pm or so. She was definitely not feeling well at all and she was miserable.

When Maria and I came back into her room after the shift change at 8:00pm we immediately knew she was in serious trouble. In all honesty, she looked worst than she did on her first day when she arrived at the PCMC... Her color was white, her temperature had risen to 40.9 degrees Celsius, her feet were as cold as ice and her eyes sockets were blackened and sunken. There were 10 or more people in the room desperately working on her which was also just like her arrival at the PCMC. For me, the major difference between the two situations is the knowledge that I have gained over the past 54 days. I couldn't read Tori's vital signs originally but I can now and as I focused on her rapidly dropping readings I was shocked and dismayed. Her blood pressure was extremely low at 80/30 mmHg or less (normal is 120/80 mmHg or so), her heart rate was 190 or higher and even with the ventilator her respiratory rate and oxygen blood levels were falling. She was also severely dehydrated because of the constant G-Tube drainage of her stomach bile. The lead attending physician quickly called Maria and I into conference and we were told she was in a very dangerous Septic Shock condition and that her organs will begin to fail without instant Dopamine injections which have the unfortunate risky side effects of causing Cardiac Arrest... We had no other choice but to give it to Tori and to hope and pray that it worked. While they administered it I quickly hit the internet searching on Septic Shock. I knew it was very bad and my first two searches indicated that it kills 50% of the patients who have it and that it is the leading cause of death in ICUs... Tori was truly fighting for her life once again and we were absolutely scared.

My search also indicated that the source of the bacteria MUST be removed as quickly as possible so I informed the doctor that the PICC Line needed to come out now. Of course without the PICC Line we needed another access point into her heart so the doctor performed a quick surgery to install a new type of PICC line (it has a specific name I cannot remember at the moment...) from her right collarbone, through her lung cage and into her heart. Once it was in they quickly administered the Dopamine and removed the other PICC Line in Tori's arm. Then we waited and watched and there wasn't much improvement in Tori's condition. More Dopamine was given and we waited and watched again. This time her blood pressure began to slightly increase so the dosage level continued for several hours as Tori's vital signs began slowly improving and moving in a positive direction. By 1:00am Friday morning all of her vital signs except her blood pressure were within non threatening levels. Her blood pressure was around 100/45mmHg and that was expected to improve but lag behind the other vital signs. The ventilator had control on her breathing and her heart rate was between 130-140 beats per minute. Her fever persisted and her temperature remained in the 38-40 degree Celsius range. After a couple more hours of monitoring Maria and I finally went to bed and were once again so very thankful that Tori was still with us all.

In looking back on this situation, the speed of which it hit was astounding and moving forward we must be much more observant and aggressive in watching for various signs in Tori's condition. We are working with and depending on our awesome doctors to guide us and our first priority moving forward MUST be to get Tori's digestive system figured out as there is definitely still a problem there... Another must - no more PICC Lines!! They are just too risky and we have been burned twice by them... All medications needs to be delivered through Tori's G-Tube or NJ-Tube. She will just have to get poked for those that can't be administered in that fashion.

Thank you all for your continued thoughts and prayers. Please, please keep them coming for Tori!!

Sincerely,

Tim, Maria, Tori, Whitney and Brendan