Wednesday, July 27th - Day 38 Update

Hello again,

Tori has made another move within the PCMC. She was relocated today to the CMU (Childrens Medical Unit) on the 3rd floor. This unit is a step up from the PICU and we hope to stabilize Tori during the next 7-14 days. Our main goals are to eliminate the E coli bacteria in her blood, get the minor Pneumonia corrected in her right lung and to get her digestive tract totally functioning normally again. If we can just get those three items done without ANY other backward steps, Tori could finally be in a 'stable' condition. Then we can focus on the Physical and Occupational Therapy at either the NTU or the Health South Hospital.

Tori's sleeping habits throughout the past few days remained intact today. I only had to give her Benadryl and Valium last night to keep her calm, relaxed and comfortable. Today, just as yesterday, she would open her eyes occasionally for about 10-15 minutes then close them again to sleep. We are quite sure the E coli is causing her severe stomach pain so we are giving as much pain medicine as we can to combat it. Nothing too strong, mainly Tylenol, Benedryl and Valium as needed. We also began a very slow feed today of Pedialyte through the NG Tube in Tori's nose. We stopped the feed late this evening to see how Tori will digest it and we are hoping for the best.

At times today when Tori was awake, she exhibited some agitation and as well as some mild cases of Myoclonus episodes. There would usually be one 1, 2 or 3 Myoclonic Jerks per episode and they weren't nearly as extreme as they have been in the past. We have found that if we try and talk Tori through them and keep her as relaxed as possible she can sometimes make it through without any facial grimmaces or observed pain at all. Keeping the vicious circle of agitation, anxiety and Myoclonus under control is the key goal here. Again, she never got even close to how bad this was in past episodes... Tori's legs appear to be the least affected by the Myoclonic jerks which is another great sign. They mainly effect her arms and torso at this point which do not appear to be as painful as her legs were. So either Tori is too tired and sick to really respond to the Myoclonus episodes at all or all of the medication to prevent them is having some postitive effects. We are of course greatly hoping for the latter to be true... We shall see.

After 38 days of caring for Tori, Maria and I are now at a point where either one of us MUST be present at Tori's bedside as much as possible. We are the only ones VERY familiar with all of Tori's symptoms, expressions, reactions, pain points and overall feelings and we know all of the corrective responses and actions to most of them. We are VERY familiar with all of Tori's medications as well as when they should be given and when they shouldn't. The PICU nurses and even doctors now trust our judgement in making calls on Tori's needs but the problem is we are no longer in the PICU... So we are working with a new set of CMU nurses and doctors. In meeting with the Lead CMU doctor, the CMU Resident and Tori's nurses today I am confident they will be trusting us quite a bit as well. We provided them a COMPLETE overview of Tori's condition and treatment and they have been great to work with during our first day. I believe they realize our experience with Tori is unmatched and our advice should carry alot of weight in any decisions. I also noticed in Tori's new CMU Log a title with something like "Parents participation in patients care" and hand written under it was "They can do everything".

So we begin yet another stage in Tori's recovery and we will continue to do EVERYTHING we possibly can for that girl!! KEEP FIGHTING TORI!! WE ALL LOVE YOU!!

Thank you all again and good night,

-Tim and Maria