Wednesday, July 20th - Day 31 Final Update

Upon returning to Tori's room after my morning update, the physical therapist team was performing the standard routine on Tori. They also decided to give Tori Botox injections in her calf muscles on each leg. The Botox will moderately paralyze her calf muscles which are causing the majority of Tori's pain during Myoclonus and Clonus episodes. The Botox takes 24-36 hours before it is effective and lasts for 3 months. Our big problem for today was the very painful aftermath of the 3 injections Tori recieved in each of her calf muscles. The doctors used an EMG to locate the exact position in each muscle to place the Botox. The needles went well into Tori's muscles during the placement. Tori obviously became very agitated shortly after the shots and she started having severe Clonus episodes not only in her legs but in her arms and torso. We immediately gave her the typical dose of Haldol to ease her pain, calm her and to put her to sleep. Today it unfortunately had NO effect on Tori... We then gave her an additional dose of Baclofen which worked well at 2:00am episode early this morning. It also had NO effect... By this time two hours had passed and we were left no choice but to use Morphine to totally knock Tori out. It was very frustrating to all of us working with her today including the doctors and nurses. Tori will be very challenging to us all as she gets through this over the next few days or maybe even weeks...

Tori then slept until about 5:00pm or so before she started having more severe Clonus episodes. This time she became so upset she vomited her feed everywhere and choked somewhat as well during the process. The nurse had to use a syringe to extract the feed she was given from Tori's G-Tube. We cleaned her up and changed her bedding and she grew more and more agitated. Her heart rate spiked, her breathing escalated and now her temperature began rising. She was at 37 degrees Celsius for days and now she was at 38.9 degrees... We ended up having to quickly repeat the Haldol then Morphine cycle we used earlier to knock her out again. The doctors now believe she Aspirated the vomit into her lungs which has now altered her breathing and given her a fever. Blood and throat cultures have been taken as well as a chest x-ray to try and determine the issue. Maria is staying at the hospital tonight and is awaiting the results just as I will be at home.

Today was clearly NOT a good day for Tori and to be perfectly honest it wasn't for me as well. I was up starting at 2:00am this morning and I worked with Tori non stop throughout the day. I felt so frustrated and helpless at times because there is nothing I can do to ease her pain which continues to seem worse and worse... During all of this the entire family of Brady, Tori's 7 year old roommate for 4 days, entered the room and I was left wondering why. I then found out and was crushed because Brady is out of options at this point in his young life... The PICU has been a very tough place the last few days and this news truly devastated and un-nerved me. I had to leave the building for a quite a while to compose and collect myself and took a long nap immediately after returning to Tori's room. There were many people who commented today that I wasn't looking too well and they were absolutely correct. The time is certainly NOW to get out of the PICU...

That leads me to the only good and perfectly timed news for the day. Tori IS going to be moved to the NTU (NeuroScience Trama Unit) at Primary Childrens Hospital hopefully tomorrow. She would have today but there wasn't a room available. Once there, the neurologists can work exclusively on her and get the Myoclonus and Clonus episodes under control. They will also initiate more extensive physical therapy on Tori. The NTU is exactly where we want Tori eventually because it is the best in the west for neurological therapy. Health South and Utah Valley Regional Medical center have always been considered interim solutions. The goal of the NTU team will be to stabilize Tori prior to her moving but we are hoping and praying that Tori can demonstrate the level of acuteness needed for her to stay put. It is a stretch goal for her indeed but it would sure be nice to see.

The last bit of good news is that Tori's new wheelchair arrived today. Unfortunately again, we are now uncertain as to when she can get in it...

Thank you all again for the very much STILL needed love, prayers and support.

Sincerely,

-Tim